sulfasalazine

earthspirit

ok im 52 i have had this since childhood but no dx until early last year. i had suffered classic flares in the past but antibiotics pain meds and just common sense got me through them.

i have a long history of raised white blood cell count but with no obvious infection.

when i got this never ending flare, it was in my hands & by the time i got to see rheumatologist, after a visit to A&E thinking i was having a heart attack, the inflamation levels in my body were very high.

it was apparently the uncontrolled inflamation which went to all joints that caused this blood issue, where the platelets, the bits of blood which stop you bleeding to death, got too thick and sticky and there is the risk of deep vein thrombosis or sudden death from a clot. i was prescribed aspirin to thin the blood. i did not have raised platelets until about 6 months ago when my mobility was affected and i could hardly walk and very quickly became unable to walk at all properly.

up until this happened i had a huge amount of pain & had lost over stone in weight but i did not really feel exceptionally ill nor did i have the tiredness. as my muscle tone weakened and more and more joints flared, i was wiped out with exhaustion which was a big big shock to me - positive confident healthy blah blah

i dont think i know specifically why my blood is like this but the rheumy said that is what happens when the disease activity is high & there are multiple flaring joints.

i was literally told that i was in a life or death situation and if i did not get the infection levels down the dvt was going to be a constant issue for concern.

that is why i am now taking this sulf & why i refused methotrexate as the risk of a stroke/heart attack with such a severe condition was a big risk for me to take.

my thinking is that if i can get the platelets to return to normal and i can gain some mobility in my legs, i can walk, swing my arms and help regain all the lost lean muscle. im 5ft 6 was a lifetime 9stone 4 and have now dropped to 7stone 12 which is freaky.

im a homeopath and the way of natural healing is my first though always but in my case i didnt even take homeopathic medicine as the doctors were concerened about the affect on my blood.

i think im like this because of not having any treatment but the RA was so advanced by the time of dx i didnt want to further compromise my heath by taking radical aggresssive meds.

my lungs have an inflamed pleural membrane and i have all sorts of other random organ pains (they thought i was perhaps diabetic but not) - this is the real disease we are fighting. i have few really damaged joints & if it was all about protecting just the joints i wouldnt be taking the medication.

this is ultimate progress of uncontrolled RA and why i get so annoyed with people who say oh its just wear and tear of the joints - no big deal.

i dont want to freak people out as the new drugs are helping save lives and i read the article on here about the anti tnf drugs which are cutting down deaths by 50%

dreamdaisy

Right, you're confusing your arthritises. OA is defined as the 'wear and tear' one, RA is an auto-immune type. The general populace don't know the difference (and let's face it they don't need to) and it's up to us who are affected to educate. Quite how you have managed to get to your age without a diagnosis is astonishing (and you do seem to be struggling to get your head around the whole thing). The meds are essential to quell the immune system to at least reduce the flaring - that should ease some of the strain on the rest of your body. If walking is a problem then invest in some aids (if you haven't already) as they will ease the strain on your joints.

Of course taking medication is a personal choice, but if you choose to opt out of taking a drug that may help then you have to be prepared for the consequences. There are a number of associated conditions that can crop up with having RA, rheumatoid lung disease for one, and the meds may help to avoid these things arising but who knows? Everyone is different but one thing is for sure - untreated RA leads to joint damage and I cannot see how your joints have escaped that as you say it has been going on since childhood. Perhaps all your current health problems can be attributed to the rampant RA so perhaps that is a reason to consider supporting the sulph with something stronger. I am fortunate in that I don't get too much in the way of side effects from the meth etc but I always feel better in myself when I have to stop them. I know exactly the last time I felt well, it was October 2001. It was a nice feeling - at that time I only had the one fat knee to deal with, I knew an op was on the horizon and I thought that would solve the problem. Strewth, talk about naive. DD

earthspirit

quite how i got to my age without dx is also astonishing to me and the doctors i now have. i got fed up going to the doctors and seeing specialists who all muttered and mumbled crap. i seriously probably did look and was on the outside at least, incredibly healthy fit and active.

maybe i should sue sumbudy? the dr i have now have gone through my medical history and they say loads of detailed descriptions of "flares" but nobody did anything. when i was about 22 i passed out after a sip of cider and ended up in a&e. they said i had a bone infection in my left index finger in one joint and they gave me antibiotics. ive had boxes to put on my head with lines and holes inside them to correct my balance. i have the eply maneouver done which involves your body being swung violently from side to side to correct hearing ear neck and jaw pain. this really fckd my neck some more and was the start of the brachial nerve damage. ive been given water tablets to remove fluid retention in knees ankles and wrists. ive been told to do excercises which were to the detriment of said issue ( i didnt do them cos i couldnt move my arm)

i have been told i need more excercise - oh mate didnt you hear me say i was a sea swimmer and used to do 14 miles and still could until they wrecked my neck. i did yoga every day and also cross country running. not enough excercise eh?

ive had neurologists tell me it was all in my head - yea actually laddy it was lol

ive had psychiatrists quote bits out of books i actually knew virtually by heart myself.

i have been called a fascinating case and this i did complain about due to the context of the rest of his report.

i am in shock at the dx cos i felt that i was some kind of nutter.

i am in shock at the severity of my disease in such a short time with only a couple bent finger joints to show for it.

the RA, the autoimmune disease attacks every bit of your body if its not under control. how nobody realised i seriously do not know - all i do know is that i reached point zero in one hit.

luckily most people or probably virtually nobody gets to the state im in without prior visible warning.

im on other forums wehre nobody takes any meds for the RA and are all doing it with gluten free or other diets. none of them seem to have got to the stage of having any other internal organ damage or problems with blood etc

earthspirit

invest in some aids??? i have neck flaring from 2 - 7 cervical vertibrae plus ostephytes which are all tangled up with the nerves and the joints and this is causing brachial nerve damage and pain like nothing on this planet. they are the same sort of nerve as the sciatic nerves in your hip and legs, only the pain from brachial is much much worse.
any pressure on shoulder or neck and i topple over pass out with the pain.
elbows all crunchy and flaring and hands wont bend or grip. i can hold a sterring wheel and type but i cant hold cloth cup pan kettle brush wet towels and they wont bend at the joints properly either. holding stick is totally impossible and leaning on anything makes my head think its going to explode. thats why i am hoping the physio can get me back walking

stickywicket

Please forgive me for being so apparently obtuse but I’m really struggling to understand you, earthspirit. You say you are ‘in shock at the severity of my disease in such a short time with only a couple bent finger joints to show for it’ but clearly you have had it, undiagnosed, for years. Given that you had no treatment, I think it’s more surprising that the bent fingers are the only obvious deformities. The sulph will hopefully keep it much more under control from now on. You also write ‘if it was all about protecting just the joints i wouldnt be taking the medication’. Why on earth not? I just don’t follow that.

Now, platelets. They are always raised with RA. That’s ‘normal’. Once you can get your RA under control your platelet levels will probably go down. As I’m on meth, mine are constantly tested, not so much to see how high they are (They’re frequently above the normal range) but more to ensure they don’t get too low. No-one has ever mentioned DVT to me and I do 2 x 11 hour flights annually. My rheumatologist always asks if I’ve been to see the family again and has never warned me it could be problematic.

As for exercise – it’s a really difficult one. I’d be very surprised if they intended you to run or swim long distances or indeed any other exercise which has high impact on joints. What I’ve always been told to do was the really boring stuff detailed in AC’s Exercise booklet. I’m not sure how I’d get through mine every day without Classic fm or Test Match Special but I know that, if I didn’t, I’d have lost much more movement than is currently the case. And muscles support joints so exercising (within sensible limits) actually lessens pain. (However, over-exercising will worsen it.) It won't, however, stop the disease. Only the meds will do that.

As with so much in life, I find a lot of the coping with arthritis is essentially finding the happy-but-boring medium – doing enough to make you wish you hadn’t but not doing so much that you make stuff worse, except as an occasional, pre-meditated venture which you know will be worth it. I had a lovely pre-meditated venture yesterday at a wedding. Did no prescribed exercises while walking and standing far too much, resting far too little and drinking a little too much wine. Pure magic! And well worth today’s payback.

dreamdaisy

I was only trying to help. You have inundated us with so much detail it's very hard to remember what is what but I think I've got it now and I apologise for being such an idiot. I cannot see the point in suing someone apart from the twerp who did that maneouvre, no wonder your neck is damaged. DD

tillytop

Hello again earthspirit

I see from your earlier post that you have decided to stick with the sulf - and I really do hope that your body stops rebelling against it sooner rather than later and that you do begin to feel some benefit.

Reading back through your posts I can completely understand why this diagnosis is such a shock for you and, although my situation is different, I can quite see why you are struggling hugely to understand what is/has been going on and where to go from here.

I hope I am not speaking out of turn here but I pick up from your posts that you are, understandably, horribly upset, angry and confused by your diagnosis and its implications. And I think perhaps adding to that confusion is the conflicting advice you are receiving from your GP and the different specialists about what you should and shouldn't have meds wise (eg re the methotrexate). I wonder if what might help you most of all is if you are able to have a proper, frank conversation with your rheumatologist about your situation and the options open to you for managing your RA. The reason I say this is that it seems as though all your symptoms have in the past been dealt with (or not dealt with) individually by different specialists because nobody picked up on the RA. But if most (or all) of them are now thought to be due to the RA, then the rheumatologist ought to be taking the lead on this and helping you to move forward. He or she is also the best person to advise on the appropriate risks/potential benefit of the meds because it is a specialist area and the GPs are rarely fully up to speed on all the whys and wherefores.

If, as sounds likely from what you have said, all your non-joint symptoms are due to the uncontrolled RA inflammation, then presumably these would be best managed by taking the appropriate meds to try to damp down that inflammation. Otherwise all that you are doing is trying to treat the symptoms, rather than tackling the underlying cause. As you have found, unmanaged RA has the potential to cause all sorts of other health problems - I have a number of non-joint related RA health problems DESPITE years of RA meds but I know for sure that I would be far worse off if I hadn't taken them. I know too that, in my case, some of these symptoms can improve when my RA is under good control so it may be that the same will happen for you too.

Finally, please, please pay no heed at all to any RA site which tells you that people have managed their RA purely through diet or other non drug means. Much as none of us like to accept it, RA is a "proper, grown up" disease which, like it or not, can only be managed with "proper grown up" meds. And without these meds the disease WILL progress.

Right, I fear I am waffling but please do consider trying to contact your rheumatologist (or ask your GP if they can arrange an urgent appt for you) to see if you can get some proper help and support. You said before that it is very hard to get hold of your rheumatologist - but does your hospital have a rheumatology helpline you can call? I think most do.

Thinking of you.

Tillyxxx

earthspirit

thank you all for your informative and supportive posts.

i think in part i have reacted to the almost panic by the doctors and the rheumatologist. ive taken numerous homeopathic remedies over the years which all seemed to be quite effective in controlling whatever i had wrong with me.

maybe just maybe they are concerned that i have obviously become quite seriously ill and nobody noticed it.

not everyone with RA gets severe joint damage and that is the point im making regarding not having much myself.

its not the buckled joints that trouble me with this disease but the actual organ damage, from which i appear have trouble with. you can get a new knee but you will struggle a bit if your heart packs up

my platelet level is 1100 at the moment and it is this the doctors are concerned about. there is no RA lung damage but the pleural membrances are inflamed. there is no diabetes but my pancreas is inflamed.

ive had a twisted ankle joint since i was about 14 which actually i forgot about, as i have learnt to walk straight perfectly well again and a few finger joints that i really see as nothing. i do worry about the condition of my neck.

i dont get offended by anything people write as its opinions and useful knowledge.

smoking is garbage - **** should be totally banned or only available on prescription. stopping did me no good except stress me out but if there is that one thing in my life i could change, it would be my addiction.

............if i could just walk a bit i dont think my head would be in such a mess with these drugs. i was told to restrict all that i was doing physically as it was my attempts to get healthy and put on weight and regain muscle that caused the multiple flares. being the weight of a 10 yr old is not healthy for the mind.

dreamdaisy

I dare to posit that 'quite effective' is hardly a ringing endorsement of homeopathy. I think homeopathy is a great for the worried well but for the properly poorly well, cutting mustard it won't.

RA is a strange beast but then all these auto-immune things are. I wonder if your joint damage is more widespread than you realise: you appear to contradict yourself left, right and centre. You state that you have ignored a twisted ankle joint and that you see your finger joint damage as nothing. I don't understand the latter at all considering your posting that you can still drive but cannot manage other humdrum stuff. The neck thing, well, I do get that. The human neck is a dreadful piece of design - seven little vertebrae trying to support one of the heaviest parts of anatomy, now that is utterly ludicrous. DD

tillytop

Morning earthspirit

I hope you will take my comments in the spirit in which they are meant – and I don’t often speak out like this. But I feel I need to say that if you continue to assert the fact that RA can be controlled by diet and/or homeopathy alone and to belittle the impact of joint damage, I worry that you run the risk of alienating the very people who, despite being very unwell themselves, are trying so hard to support you.

From what you say, your lack of mobility is the thing which seems to be causing you the most distress (and I do understand that) but you only have to look through the other forum posts to see that many or perhaps most of us here struggle with mobility – many of us due to the very joint damage you see as unimportant. And your comments about the apparent ease with which damaged joints can be replaced and the assumption that all will be well thereafter, I find quite distressing.

Many on here, particularly those who are younger (or considered too young by the NHS) have to wait a long time for new joints - even assuming a new joint is possible given the extent of the joint erosion and other complicating factors. Sometimes joints cannot be replaced, sometimes joint replacements are not successful and sometimes they can be replaced only once and if done too early may not be able to be redone if they wear out. And with RA, joint damage is likely to affect multiple joints which complicates things further.

I really do hope that you can begin to come to terms with your situation earthspirit but please remember that, in addition to arthritis of all sorts, many of us are, like you, also trying to cope with non-joint arthritis complications, nerve pain, limited mobility, and all manner of other health issues. I feel sometimes, reading your posts, as if you think we don’t know what we are talking about and that we therefore can’t understand your situation but I truly believe we can and we do – so please don’t feel alone with what you are going through.

Really good luck with the GP today if you do manage to go and please do let us know what he says.

Tillyxxx

wibberley

Hi Earthspirit, I've been on sulpha for...racks brain...probably about 3 years. I had the head-splitting headaches, and almost gave up on more than one occasion. Glad I persevered, as it's been good for me. Am having my first flare up though, in exactly the same place as you...and can completely sympathise with the pain, and the feeling of your shoulder giving way when touching a certain point. I'm lucky in having a very good physio who managed to make the pain go 2 months ago. It's back and being more stubborn but hoping my next appointment (tomorrow night) will be more successful. One thing I have found that helps, is to heat up one of those microwavable heat pads, then lie down with it resting against the shoulder/neck. Don't do the normal thing, and sit with it resting on top of your shoulder - I tried that once, and made things a lot worse!

Please don't be despondent. Sulpha and mtx are only 2 of many dmards out there - I'm sure there will be one (or two together) that works. Just a case of trial and error.

Wibberley

earthspirit

hi folks and im sorry that i seem to be causing so much irritation among people who are, i know, trying to help.

firstly i do not think that homeopathy & diet are the means to treat this disease as it is at the moment. however here is what i believe quie simply. all these years i was undx and had flares in joints which doctors did not treat, i prescribed homeopathic remedies which seemed to resolve the problems. i would then return to being "normal"

i have no doubt that this flare which i now have was triggered by previous deterioration in health diet etc & my stress levels were sky high as i did have severe problems with my neck and mobility & had to deal with other "environmental" triggering factors.

i have other non RA skeltal issues with the broken rib lying on my lung. this is untreatable and causes me great distress as coughing in any shape or form makes it feel like im having a heart attack. this is very freaky and stressful.

i am not belittling the terrible joint damage from which others suffer, but in my own case the xrays show very little damage, which is another reason i was undx. over the years i have always put emphasis on joint strength and excercised and taken glucosamine, all protective. i feel very lucky, fortunate that this is the case.

i have spoken at length again just now with my own dr - contacting aberdeen rheumatology is a source of concern for the doctors too.
he has agreed with the decision that i should stop sulf and that the main issue with my RA is the much higher platelets count. (1100) he did agree that most people with RA in severe form have high platelet counts but not as high as mine so im back on the aspirin to try to bring that down.

it is my knee, causing the flaring in other leg/hip joints that is also causing the platelet count to be high. it is creating the situation of being sedentary in lifestyle, as well as the major problems from the brachial nerve pain restricting my upper mobility.

i am on the shoulder replacement list BUT have been advised that having op is likely to cause many more pain issues due to neck. the damage there is not RA related.

there are complex issues and perhaps that is why i see a few bent finger joints not playing a major part in my overall health. ive had the squint ankle for decades and dealt with it. it functions perfectly well normally. it certainly didnt stop me doing cross country running, even tho it would swell and be very painful for a week after sometimes.

maybe i write too aggressively or forcefully which does not reflect the crippled wreck sitting at the keyboard.

i am a driver who is well used to travelling the 5 - 6 hundred miles between london and aberdeen and that is now something i cannot do, but i can drive 120 mile round trip without too much suffering and feel perfectly competent. i have a sheepskin steeringwheel cover and this makes it the perfect thickness to hold with my swollen hands. im just waiting to go from a manual to auto car and this will stop any further neck/brachial nerve irritation/pain as i wont have to use arm to change gear.

have been dealing long time with the disability and lack of mobility before i went into this huge flare so have adapted how i do things.

my dr was concerned that i had lost a further 4 pounds weight since starting sulf - my normal weight is 9st 4lbs and i am now down to 7stone 12lbs. my legs and arms have huge loss in muscle tone. i can hardly eat anything and sustain nutrients and calories with ensure plus drinks. i am not in a good shape at all. this is why i took the sulph but am now in a worse place with the side effects.

surely if you are all experienced you can realise that being in pain 24/7, sleeping for only 50 mins at a time, lack of food etc is affecting my mind as you must all have been in this situation if you have sever form of disease?

btw i dont get offended by honest comments and your opinions are valuable to me, lets me bounce off my own thoughts against yours. i realise many younger people are doing what they can to protect joints but there is medical evidence that many people do not ever suffer the debilitatating joint damage that can occur. the rheumatologist, who luckily for me is one of the top guys in the country agreed totally - the issue being that there is no way of them telling who will have extreme damage and who will have none.

i was going to get moderator to delete this thread as i dont want to freak out other people with anything i have written but perhaps it is an example of the turmoil which this disease can create in your mind as much as your body.

i came onto the forum making a post of how pathetic i was, which was directly related to the side effects of the sulf - i havent taken one today and slowly the headache and depression feel like they are lifting.

having a clear mind is important to me and i just didnt have that with those drugs.

tillytop

Hello again earthspirit

I have been worrying about what I posted earlier so I am really pleased you were not offended. I was just trying to say that, although you clearly have some very complex issues going on, you are not alone in that.

I am really glad you didn't ask the mods to delete this thread - because I think there has been some useful discussion and, although we do tend to mindful of the possibility of alarming others, it would be a real shame if people felt they couldn't ask for support for fear of doing so.

I am glad you have spoken to your GP and hope that he can contact the rheumatology team on your behalf, sooner rather than later so that you know what your options are.

Thinking of you.

Tillyxxx

earthspirit

thanks again tilly and i am glad you feel that way about thread and open discussion.

i am a very open honest person when talking about personal stuff - in my job as a homeopath and transpersonal councellor this was the only way to be in order to get others to open up and let me help them. put in a very simple way, i have traded my deepest darkest fears for theirs which allows the trust that is needed for cure. that is me as myself - i dont go between healing mode and personal mode. what i feel quite sad about is that for the last 6 months i have lost "empathy" mode for people whinging about trivial superficial illnesses.

another aspect i have found of the mental affect of RA is that most people i have spoken to were previously the strong minded fighters in life and rather than go under mentally, like the weaker of souls in the population, we were the ones standing strong.

i havent come across many RA sufferers who were the weak and timid sort in life. we didnt let the stress buckle our bodies with other less serious disease and we didnt let it take our minds. no no no - our bodies just went on attack of ourselves rather than let anything or anyone else bring us down. if only that mental aspect of the disease could be incorporated into finding the cure eh?

hope that is simple to understand lol i know what im talking about even if nobody else does haha

wibberley

Hi again Earthspirit,

I think you've probably done the right thing coming off the sulpha - I wonder if your low body weight is contributing to the debilitating side-effects?

My rheumy (also in Aberdeen...could be the same one!) gave me gentle exercises to help counteract the muscle loss due to steroid injections at the time. Perhaps you need some advice from him and/or occupational health.

Despite having been diagnosed age 7 (am now 46) with Juevenile Inflammatory arthritis, I've not had any damage to my joints either, and I'm sure people who meet me think I'm a bit of a fraud when I tell them I've RA!

You must concentrate on getting some strength back, and then improvements in other areas will hopefully follow. I'm also glad to hear your depression has lifted a bit - that must be such a relief for you.

Sounds like you have finally found a rheumy you can trust to do all they can to help you and we haven't seen blue sky in Aberdeen for weeks now which can't have helped things..so lets hope that changes soon!

Take care,

Wibberley

earthspirit

wibberly hi and just as i read your post the sky turned blue - can you see it too lol!!!

my low body weight is freaky - im like an anorexic with food right now and that is stressful especially when i have periods of being absolutely starving but yet a mouthful makes me feel sick.

i didnt lose any weight until after i had the first steroid (kenalog) injection and i have asked about this being linked but nobody given me a straight answer. after the second one which was like i had received a placebo (totally utterly useless) i lost more weight.

i was putting some weight back on and then some dietician told me i was not eating enough high calorie foods and that i should stop weighing myself and i would put on weight naturally. (i was on salmon & prawns and fresh natural foods with veg and fruit etc & had lowered gluten intake). i followed her advice and within a few days went back to feeling more sick and less able to eat food again, losing the few pounds i had gained. she also made a really stupid comment which i didnt realise till much later, in telling me to have milk shakes to add calories, when in fact i had told her specifically that milk was the one food i did not enjoy apart from some in coffee and had virtually drunk none since childhood, getting my calcium etc from different dairy products

as the hours pass since last taking sulf i am feeling so much better in my head which is thinking more clearly and seems to have fresh air going through it rather than a deep dark muddy pool

i cant fault the treatment i have had over the last year from doctors here. i think they are so aware of the previous undx situation and going out of their way to listen and understand & explain. the rheumy is a lovely old guy (well older than me) and the younger ones ive seen have also been a great support

to anyone out there, the rheumatologists are really working exceptionally hard to find ways to help us feel better and protect our future health. i was told by one that when the trigger for RA is found the cure will be rapid as they know so much about the disease.

got app on 6th july so hopefully something new can be discussed.

wibberley

I'm actually in Banchory (18 miles west of Aberdeen) and it's raining, so I hope your blue sky is heading my way!

Can't say kenelog injections affected my weight in any way, but we all react differently. Can I ask, does your rheumy's surname begin with an 'E'? If it does, you're in good hands! He was my rheumy from the age of 15 through to 45.

Your last post sounded so much more upbeat than your others, and I'm so glad of that. Sometimes, it's best not to dwell on how we've been treated by the medical profession in the past - RA feeds off stress. Good luck with that next appointment....there will be a suitable treatment out there for you.

Wibberley

earthspirit

haha his name begins with R so you probably know who that is if you have had treatment for so long.

i do feel more upbeat as this stuff is getting out of my system. intestines still feel a bit grumbly and head has waves lasting a few seconds etc but defo not feeling as ill.

i am going to hold the physio to ransom until she gets a way to fix my knee and then maybe i can progress lol - she is in woodend and did the hydrotherapy which is singly the best treatment i have had for mobility.

she told me to eat gingerbread with butter to put on weight so maybe i should have listened lol

my kids and partner just said how much better i look today rather than looking grey and weary eyed - looks like sufasalazine just wasnt the drug for me at this skinny horrible weight. never again will i say does my bum look big in this 8)

wibberley

Good luck with that hydratherapy - as a kid, I went to Hazelhead swimming pool daily and floating around in that water was the only time I was without pain....felt fab....but I'm still a rubbish swimmer!

Lucky you being told to eat lots of gingerbread...I'd love a prescription like that!

Wibberley

skezier

Hi Earthspirit,

Glad your feeling and looming a bit better today.

Like you I reacted badly to the sulfa as well. It was very unpleasent to say the least.

Its two fold when you lose the muscle as they are alos a way to hold the joints together as well as get movement so I really hope they will get into gear and help you with some exercises to build them back up./

I also have a totally mashed neck. Degenerative discs, dehydrated in some cases, bulging ones, extra bones growing all over the place and inflammation from the top to the bottom. There is advance spondy in most of it now.

I know how much it hurts and interferes with what you want to do but I am lucky I have been able to take some heavy duty pain control as well as the pregabalin and reading your posts I can't help thinking you would benefit from some better pain control as well.

Like you my PA was uncontrolled for years but I wasn't as lucky and do have some erosion.

Cus of 2 circulation disorders I too have high platelets but have had for life and they have moved on to giving an infusion for that now and it helps to bring the count down so maybe something like that also could help for you?

I would asking a lot of questions of my rumo in your shoes actually.

The infected bone isn't RA its another type or just unfortunate. Ware and tear is OA related with uninformed gp's and rumo's (a bit of a thing with me I am afraid as some here know )

The platelet thing not only comes in with RA it can do so with raynaurds and that's something that also might be worth asking about. I also take tablets each day to help with the blood and that also helps to bring the platelets down a bit.

The other thing they do with both my neck and back (thats in at least as worst state as the neck) is a lot of intervention via the pain clininc.

Mine now is purely about pain control and management. I still have muscle and came into it with a lot so its a third of hat I had but I also keep going.

I really hope that with your RA being that aggressive you do think abut having the mtx.... Been on for a few years now and the side effects have been controlled.

Sometimes we get bogged down with it all and thats when the one day at a time is useful. Don't look too far ahead just at the next day.

I have looked at the food link and there is no science to support it making any difference. I know sometimes can do the ibd and ibs but the bones in my case have always stayed constant no matter what I either do eat or don;t eat. Cus of that I wouldn't trust alternative treatments only but they may well help,along side conventional meds.

I really hope that you will carry on feeling a bit better and they will help you more soon. Cris x

Hey Lois its so good to see you xx

earthspirit

hi chris and big thanks for your very informative response.

ok i have had raynaults since i was a kid and that was always written off by doctors and my parents and family as "nothing" - just wear gloves.

i was the kid with the purple and white hands and feet and been there since as far as i can recall - about 2 or 3 yrs old.

never had any treatment and used to worry people when they saw my hands and feet after swimming in the cold north sea.
when i moved from aberdeen to london in the late 1980s i virtually never had it for years and put that down to a warmer climate.
it came back again around the 1990s when again i had more children.

since this mega flare my joints have been so hot & swollen that it doesnt really seem to have troubled me.

i was told there was not any connection so i am interested to hear that there is.

sometimes you can think up wonderful things to ask the consultants but its hard when you dont know or havent realised the things to ask about.

i take 8 paracetamol, 6 dihydrocodeine and 3 diclofenac for pain. i could up the dihydro by a couple which i do if i need them in the middle of the night.
the diclo gives me big boomps in the chest which i am told is reflux even tho i have only ever suffered acid indigestion once in my life. so as well as the oomph in my chest from that i have the boom in my lung from the old busted broken healed rib. along with the raised platelets it does not make me feel confident about the condition of my heart and what it feels like its doing every day.

but there is lots of food for thought in these posts and the many replies i have had. in a way i feel sad giving up the sulf as it did seem like it was helping, very quickly, in even a tiny way.

if i can get hold of the rheumy maybe he can think of a different way for me to take it, or possibly knowing how i have reacted to this might help him in some other prescription.

time consuming this disease innit?? :roll:

stickywicket

earthspirit wrote:

the diclo gives me big boomps in the chest which i am told is reflux even tho i have only ever suffered acid indigestion once in my life.

If you're not already on lansoprazole or omeprazole to protect your stomach, ask for it. You don't need a dodgy stomach/oesophagus, believe me. There is such a thing as 'silent reflux'.

earthspirit

i do have those drugs to protect stomach but they made me a bit too "sicky" but yes i should take them. do you just take one a day in the morning? before all the meds?

i didnt know what silent reflux is cos i havent heard of it???

i thought you had to have some feeling of acid regurgitating itself or some other symptoms.

this only happens with diclofenac and have gone back on the ibuprofen 400 quite a few times but they are no longer effective for pain. started taking them around 1998 so probably played a part in drying out my joints eh?