Should I stay or should I go?

keith1971

Hi all,

I'm in need of a bit of advice again......

Had a blood test last week & saw my rheumatologist Tuesday just gone. Everything was normal blood wise but my little finger was starting to swell a little.

I'm not due to see him now again until the end of July.

Since then the pain in my knee, elbow & ankle have increased & little finger is still swollen. My pain levels had decreased a lot whilst taking sulfazine.

For the last 5 days I have been taking 150mg of Diclofenac a day also.

My question is should I try and see him again this month to try and alleviate my symptoms or just keep taking what I'm taking & hope things will die down again.

My understanding is that if the DMARD is doing it's job correctly I shouldn't be experiencing increased pain and swelling, right??

Sorry if this sounds panicky & silly but I'm still new to all this & paranoid about my fingers swelling as that's how my disease first reared it's ugly head & one of my middle finger's is already damaged & only bends halfway.

x

frogmorton

Hi Keith

have you got the telephone number for the rheumatology helpline or nurses at your clinic?

I would give them a quick bell to see whether they think you should be seen sooner.

Try not to panic though sometimes you can't bend things and when the flare dies down it settles back down.

Phone tomorrow morning and keep taking the diclos to the max dose you are allowed.

All being well this is a flare which will subside.

I do still get flares sometimes even on DMARDs, but it may well be they want to add something else to the mix.

Love

Toni xx

tkachev

End of July is a bit long to wait but ringing the rheummy nurse is usually my first port of call. It does sound like a flare,especially as it is affecting the early joints.
Diclofenic was a very successful medication for me and should be helping.

Elizabeth

Poppyg1rl

Hi Keith,
Definitely give the rheumatologist a ring, they need to know about any changes in your arthritis and as Elizabeth said July is too long to wait.
All the best Keith, try to rest as much as you can, I appreciate not easy with a little one around! but do try. X

barbara12

Hi Keith
You give them a call, there is nothing lost, and you are obviously worried and in pain.
Take care, and I hope you get an earlier appointment.

constable

I know I don't suffer from RA but I would ring the rhummy nurses in the morning. And regarding you being panicky and silly. No you are not doing either. You do have a long time till you next appointment.

Karen xx

keith1971

Thanks for the advice ladies, I know I must sound a little stupid worrying about my little finger etc.

I'm still under private health care so getting an earlier appointment isn't a problem, I just don't want to come across like a hypochondriac going to see the doc every time something new happens!

I guess it's knocked my self confidence a little as I was seeing great improvement in my condition and this is like taking steps backwards & now I'm in a panic that the sulfa isn't working anymore.

Will ring the hospital on Tuesday when my doc is back in if things are still the same as they are now or worse.

You're all little angels looking out for me & each other, it's very re-assuring being on this forum, apologies if I don't offer as much encouragement & support as you, I'm still a total novice with all this.

x x

skezier

Hi Keith,

Agree thee is no harm in ringing them. take some pics of it all if you can cus it helps them to see if it has gone down when they actually see you.

Here with an anointment in July they probably would leave you till them but hopefully they will see you quicker.

I not sure the bloods are that good at saying how it's going... Mine have raised bits but they go on is the mtx damaging me more than how is the inflammation level... Mine is complicated cus there are a few things making it higher.

I rally hope it will settle for you and maybe you need an ad in re the pain for the time being? Cris x

keith1971

Thanks Skezier,

Lovely of you to take the time to comment, I've been reading your long thread & know you're not having the best of times yourself.

Hope things pick up for you x x

julie47

Keith

Can't add to what the others have said

Hope the doc on tuesday can put your mind at rest.

Take care
Juliepf x

suzygirl

Keith, I can only agree with what the others have said. Despite being on sulfa you may occasionally stilll get flares, if it continues they add in other meds etc, as necessary.

Ring the rheumy nurse for advice, that is what the helpline is for. Your gp may be able to help if that provides no joy. Always good to try and nip the flare in the bud before it gets established, extra rest etc is important.

Hope they can help you!

tillytop

Hello Keith

Just seen your post and I can see you have already had some good replies but just wanted to add my bit too.

I think the thing to remember with the arthritis is that it is variable. So I don't think you should start to panic that the sulf has stopped working. It may be that the arthritis has become more active for the moment. The DMARDS are intended to tackle the underlying disease process, but, even if they give good control of your arthritis most of the time, they do not necessarily prevent things flaring up periodically. You may find that, with the Diclo things will settle down again within a period of time. I know you are new-ish to all this and it is easy to worry about what's going on but, in time, you will get more used to things and will know what to expect and when to worry (if you see what I mean). And about your stuck middle finger - unless x-rays have confirmed it is actually damaged, don't assume that is the case. Many of my stuck fingers improved hugely once things got under better control.

Try not to worry if you can Keith - but do call your rheumatologist for advice if it would put your mind at rest.

Thinking of you.

Love Tilly xxx

hileena111

Hi Keith
Cant add anything to what the others have said.......but what are we here for but to listen and help out if we can. Usually someone can.
Dont worry about not being much support to the rest of us. When you feel a bit better and you see something you think you know something about go ahead and answer.
I have to skip a lot of posts because i have OA and the questions from people with RA about various drugs????????.....I havent a clue so just have to leave it to ones that do know
Love
Hileena

ironic

Hi Keith,
No you are not being a Hypochondriac, you are being sensible about getting in touch with the Rheumy. I didn’t take my diclo’s very often when I first started as I thought they were not working I only found out much, much latter that they take time to work fully so carry on taking the full 150mg a day. Strangely if I miss taking them for any reason the pains become worse very quickly.
I hope they can reassure you when you call on Tuesday.
Good luck with it all.

I

skezier

Hi Keith,

I been using horrible life shampoo....

I hope given that its private they will see you while its all inflamed cus it helps them to see it re what to do. It might be a good idea to get some bits xrayed as well if they haven't been?

I have a lot of swelling and I guess its inflammation in the hands, wrists and arms and that what they tend to look at and they only look at the bloods to see if I am tolerating the mtx..... though they have just done a whole chunk f extra bloods cus i am so tied all the time... yeah I know look at the time :roll:

Pain is an evil companion Keith and that's why i wonder if you might need a add for a min. Sometimes you only need to take them as and when but at least you would have something a little stronger to help when its not being kind?

I certainly would ask about a bit of extra pain control as well. You hang in there and fingers crossed when you phone they will help you. Cris x

keith1971

Hi all & thanks for all the replies.

Things are still the same this morning but I'm trying to put everything in perspective & realise that I can't panic at the first sign of trouble & go running back to the doctor.

That said, I'll stick with taking the diclofenac & if things haven't changed by the end of the week I'll ring my rheumatologist for a little advice - that's one of the best things about still being on private health care, I can speak to him directly. I'll miss that when I go back on the NHS in a few months!!

I'm seeing my GP this week to ask for some stomach protectors whilst I'm popping those diclos, I really don't want to burn a hole in my stomach & add to my growing list of problems. Taking pills to protect me from the pills I'm taking to protect me. Now that's just contrary!!



x x x

dreamdaisy

DMARDs are disease modifying drugs, not cures. No matter what I have taken in the past I have continued to flare (withy varying degrees of severity) and added new joints to the affected list with some regularity. I began with one, the total is a damn sight more now. 'Tis the nature of the beast. I began on just sulph and it did sweet FA to control anything, for me it was not strong enough on its own (but then it had five years of untreated arthritis to deal with so perhaps that was too big an ask), whereas for williamlargs it worked brilliantly for a good long while. This is the real problem with these meds, we are all so different in what works and how and for how long. I clearly remember starting the sulph and thinking 'This is it, it will now all go away, I've had the op, the gunk has gone, and this will make it all better.' :roll: Stupid woman.

I know you are in the very early days of this business, it is a steep learning curve and the discovery that one's hitherto well-behaved body is letting one down must be tough. I am sure that as time goes by your comprehension of this malarkey will improve as you get to know what is usual for you and what isn't. Let your rheumatologist know how you are feeling and your worries and concerns, and if he suggests another or extra treatment accept that, don't fight it. These meds are meant to slow the progress of the disease, that's all they can offer. For a select few they are effective treatments though, and I hope you fall into that category. I wish you well. DD

keith1971

Yep, that learning curve is steep alright, just when you think things are going ok it all goes backwards again. Makes it worse that I'm off on holiday next week too, can't afford to be sick, not good for the family.

Ah well, keep popping the pills eh!?

x

suzygirl

Keith are you taking the enteric coated diclo?? Also you can get slow release ones, which stop all the constant pill popping. A stomach protector is very sensible.

Hope things improve for you!

tillytop

Morning Keith!

I think your "give it til the end of week" approach is a sensible one - specially since, as you say, you have a "hotline" to the consultant.

As for taking pills to deal with the side-effects of the pills, I worked out the other day that, of the meds I take regularly, half- yes - half of them are drugs to mitigate the side effects of the others. :roll:

Love Tilly xxx

keith1971

It's ridiculous eh Tilly!??

Suzy, I'm taking the 75mg slow release ones, one in the morning, one at night. Not sure if they're coated, it doesn't say so on the box.

Have an appointment with my GP on Weds so will see what they say regarding stomach protection etc.

In other news I have an appointment next week with a Mental Health Worker!!! My GP suggested it as the anxiety & stress of all this has hit me more than I'd like to admit. Not sure if it's really gonna be worthwhile for me as I'm a pretty strong person in the first place but I guess it won't hurt to see if they can offer additional support.

x x

tkachev

Hi Keith,

Sulfasalazine worked brilliantly for me for 3 months(in the middle of a DLA claim -typical) then stopped, back to square one. I still take them 9 years later so they must be doing something in the eyes of the rheummy consultant!

I was aked to stop Diclofenic after 6 months, then changed to ibuprofen which I've stopped now as humira and MTX seem to do a good enough job without it. I have dreadful stomach issues so best to protect as best you can.

Elizabeth

skezier

Hi Keith,

However strong the extra pain might be better controlled if they know your having it? Pain is a bad master to be in charge

The stomach thing is very important. I got my first and second ulcer cus f the diclos (or may have done but with IBD you never really know :roll: ) and was on the 3x a day ones with no inhibitor for 5 years which may not have been the best plan.

As Suzy said the enchanted ones are better.... they cost more and I also think your gp will go for omeprazole but see if you can get lansoprazole cus its better..... what ever they say....

My S/R's are 150 once a day and maybe thats something you could try? It gives you that bit extra for when you need it most. For me thats always been the morning cus i can't get the back and legs going too well. Till recently... now the pain doc says take them what ever time you need them most

Good luck wens and hopefully the gp will be able to come up with a bit extra for the badder days that is only as an as and when for a good while. Cris x

keith1971

Thanks for the tip Skezier.....

Omeprazole or Lansoprazole......they sound like Spanish golfers!

x

madwestie

Keith i hope things are looking better today. Flare's are a pain in the bum, well usually hands, knees, hips etc.. but i do remember ringing my rheumy nurse several times when i first started treatment she always said don't worry you are new to this we don't mind.
I think they sort of expect us to ring with worries and questions so if you do decide to ring the rheumy don't worry about it you won't be the first or the last to do it. If the swelling continues is is best to let them know.

I hope the Gp can help you with your spanish golfers(sounds like a doctor doctor joke) i take ranitadine years ago i said i wouldn't take tablets to counteract the symptoms of other tablets well years and RA later i seem to take anything they tell me to...

Tracey

tkachev

I'm sure omneprazole can cause problems with the stomach too. Thats why I only take them when I have to.

Elizabeth