Feeling down and confused

Deb123

Morning all, need to get this out as I don't really have an understanding husband, so sorry in advance.
I was taken off sulphasalasine 3wks ago as I was getting a lot of mouth ulcers and cold sores, then 2 wks later I had my bloods done just to see how I was coping without it, results were that my esr was still stable but my liver function Alt was raised from 16 to 91. So this week I tried to contact my rheumy nurse as I was beginning to flare up my hands getting stiff and painful and swelling up beautifully. Had no reply from them so spoke to my gp as I was struggling. He said he wad going to email my consultant as he wanted me seen ASAP to tell him bout my flare up and his concern over the Alt result. 3days later I get a phone call from consultant saying he had booked me an appointment for 20th and was making sure the gp had passed on his message to stop the gabapentin and have weekly bloods. This info had not been passed on! I became a bit emotional on the phone as it then hit me that I was being taken off stuff and already flaring which potentially was gonna get worse.
So end result is have to have bloods done ASAP Monday , and start reducing GABA.
I just feel drained by it all. I feel that when I get seen I'm just given meds then left to get on with it. Same as now they are taking me off stuff I'm left to get on with it with no support on how to carry on until I'm seen again. :oops:
On the cold sore front, I'm still getting them on a weekly basis, I just get rid of one when another pops up.
Moan over ! Any advice will be very much appreciated xx

Jennifer81

Hi,

Sorry to hear you are having a bad time of it all, why would they take you off the meds if it was going to get worse again? I don't have RA, I can't really give you a lot of advice in that area but I can give you support.

It isn't helpful when people you turn to don't understand what the problem is but you defo have came to the right place here as there seems to be a lot of RA suffers so no doubt someone will be able to give you advice. It's a shame the doctors can't offer more advice but at least you are trying to find it in alternative ways.

Do you use anything for the cold sores? I used to get them and found Blistex was quite good.

Sometimes you just need a good moan to get it out your system!

Hope things go well for you on Monday when you go back.

Deb123

Hi Jennifer,
Yes I think it does help to get it out! Lol . I do use aciclovir cream but it's not stopping more coming up. Am going to ask gp on Monday if I should have a course of aciclovir tablets to boost up my immune system.

I'm newly diagnosed so don't gave that much understanding of the meds and stuff, but am learning. This forum had helped with that. Supposed to be going to cake international show tomorrow with my daughters, don't want to be a nuisance and slow them down, but they have said I won't and that they will go at my pace.

Thank you for replying xx

kentishlady

Am sorry I can't be of much help as I have OA. However, I am sure you will get plenty of advice from the RA sufferers on the forum. It's usually a bit quieter on the forum at weekends.

Hope all goes well for you on Monday and you will soon be feeling a little better.

Beryl. ((()))

dreamdaisy

The meds that us auto-immuners take can interfere with our liver and kidney function, hence the need to have regular blood tests. This has shown that your liver is unhappy so that is why they have stopped the sulph as that would appear to be the likely culprit. 91 is not that high in the grand scheme of things but as you are relatively new to all of this no wonder you are feeling as you are.

Be warned that if you boost your immune system to deal with the cold sores your arthritis will probably take that as in invitation to go into over-drive which isn't really what you want. I know that the herpes virus is involved with cold sores, and you are plagued with them because your immune system has had some suppression thanks to the sulph - the words 'rock' and 'hard-place' come to mind. All auto-immuners trot along this particular tightrope, I am a lot further ahead of you with my arthritis journey and I have had a couple of spells without meds, the longest was for three months and a miserable time it was but it passed.

It can take time for us to find the right med or combination of meds, RA etc are tricky little beasts to diagnose and treat and there may well be quite a time of trial and error ahead for you. Friends and family can struggle with understanding what is going on with us because when they get poorly they go to the docs, maybe take pills and get better. We take meds and don't. It's not that easy a concept to grasp. DD

bubbadog

I'm sorry Debs that you are left to deal with all that on your own and suffering a flare up. I have been feeling totally drained and yuk for a month now and I'm not able to speak to my G.P till Tuesday!! All I have done is listen to my body and rested. I mean flat out on the sofa under my furry throw watching movies! It's all I could to get a small amount of energy. And it's all you should do especially with a flare up on top!! I hope you get some sort of information from your G.P before the 20th as that is a long time to wait. Take Care and I send you a (()).

thistlegirl

Hi Deb, have you tried Fenistil cream? I never used to get cold sores but since one of the meds, quite poss sulph I got some and it was the only thing that worked. It stings a bit but that means it is working. The other creams didn't touch them.

Is it RA you have- sorry a bit foggy today. It will take a bit of trail and error but you will find the right mix. Try to pace yourself and you must go to the Cake show!!!
Try to plan in rests the day before and after anything to charge and recharge your batteries. If I am going out at night I have a slow day before saving my energy up. Then the next day-pajamas and tv if needed!
It is tough with our "invisible" disease, if we don't tell people what is going on they won't know, that goes for husbands and Doctors! You have got things rolling with the docs, make sure your painkillers are doing enough over this period, if not ask for more. I am not married so can't help on the husband front....

I am glad you wrote this post and hope it has helped, enjoy the cake show

Thistle

suzygirl

Hi, I have lupus and my lips blister in the sun also the sjorgens makes them dry so I am constantly reapplying lypsyl. I found that using one with a spf in made a huge difference to the amount of cold sores I got. It makes the lypsyl more expensive, but they last for ages. It may be worth a try. I always found stress and uspet made mine worse, which is hard to avoid sometimes.

The gabapentin is used for nerve pain, epilepsy and fibromyalgia so it may mean you need another pain killer as you reduce the dose. Heat patches, hot water bottles, freeze sprays , gels can all be useful and are available at the pound shop.

At the start of any chronic illness you are getting used to so many changes to your life it can be hard and friends and family don't understand. Just because it isn't them going through it. We look ok and not ill, we carry on so how can we be ill? It will take time to adjust, come to terms with it all and build your own coping mechanisms.

Forums like this one can be invaluable as they allow you to connect, with others who understand. You can vent, gain support and information and make friends along the way.

Take care and be kind to yourself, try and get some rest.

Jennifer81

Deb123 wrote:

Hi Jennifer,
Yes I think it does help to get it out! Lol . I do use aciclovir cream but it's not stopping more coming up. Am going to ask gp on Monday if I should have a course of aciclovir tablets to boost up my immune system.

I'm newly diagnosed so don't gave that much understanding of the meds and stuff, but am learning. This forum had helped with that. Supposed to be going to cake international show tomorrow with my daughters, don't want to be a nuisance and slow them down, but they have said I won't and that they will go at my pace.

Thank you for replying xx

If they are happy to go at your pace then defo go, would be sad to miss out if it's something you enjoy. Might help your mood a bit too.

trepolpen

hi Deb , you need to talk to your rheumy nurse/consultant , the side effects from methotrexate can be sorted with increased folic acid , had same problem with raised ALT & had to stop taking MTX & when went back on they increased folic acid to 5mg six days a week , should sort out the mouth ulcers

barbara12

Debs I am so glad you are talking to us..its much easier than family...sorry I can offer any advice ..but dont forget we are always here..and I do wish you well with your appointment...please let us know how you get on (((()))xx

Deb123

Thank you for the lovely messages of support. They are very much appreciated.
I have just got back from cake international, I had a fab time ! Walked mainly at a snails pace. But never gave in to the offers of a wheel chair ( tho at times it was tempting ) now beached at home with fat hands and feet and shooting pains but well worth it.

Blood tests tomorrow to see if Alt is behaving better then hopefully I can go back on meds xxx



deb x

Deb123

Thought I'd give you an update.

Liver function is back to normal , hands swelling very nicely, feet hurt like hell ! Hips stiffening and walking like I'm an old lady

Had an appointment today with rheumy consultant ended up with a steroid injection in my buttock ! And told that I should start on methotrexate as I can't go back on sulphasalasine due to the coldsores and ulcers I got whilst taking it. I do feel a bit of a fraud tho, as my bloods don't really show much, I'm RF positive but sero neg. ? But there is no denying my fat and stiff painful hands. Does anyone else suffer with pain in gore arm muscle. It does prevent me from being able to straighten my arm.

So now I've just got wait for rheumy nurse app. To methotrexate. Had chest X-ray , got to have lung function test done as well. Hope it's not to long as hands and wrist very painful.

dreamdaisy

Please do not feel a fraud for the following reason; meth would not be suggested unless there is something up and there is indeed something up. From my years of reading on here I think that RA can come in two forms, sero-positive and sero-negative. If it's the latter then there could be chance it's another form of sero-negative (I have one of those) - us auto-immuners are complicated beasts. As for pain, yup, it's all over me in various ways but I am used to it. DD

DebbieT

Hi,

I'm sorry for all uve been going thru but glad to hear ul soon be starting on mtx I hope you tolerate it well, I did & I was on a very high dose it just wasn't helping my psoriasis enough. Like DD I have PsA (psoriatic arthritis)

I wish you the best of luck & please keep us posted.

Xx xX

As5567

Deb123 wrote:

Thought I'd give you an update.

Liver function is back to normal , hands swelling very nicely, feet hurt like hell ! Hips stiffening and walking like I'm an old lady

Had an appointment today with rheumy consultant ended up with a steroid injection in my buttock ! And told that I should start on methotrexate as I can't go back on sulphasalasine due to the coldsores and ulcers I got whilst taking it. I do feel a bit of a fraud tho, as my bloods don't really show much, I'm RF positive but sero neg. ? But there is no denying my fat and stiff painful hands. Does anyone else suffer with pain in gore arm muscle. It does prevent me from being able to straighten my arm.

So now I've just got wait for rheumy nurse app. To methotrexate. Had chest X-ray , got to have lung function test done as well. Hope it's not to long as hands and wrist very painful.

There is no need to feel a fraud, blood tests only show so much and if your doctor didn't think you needed treatment such as meth then he/she wouldn't prescribe it.

lavenderlady

I have lupus amongst other problems and do get the muscle pain they thought I had MS as I couldn't lift my right arm, to brush my hair I hold my right arm up with my left arm to brush I often find it hard to do my bra up and now do it up at the front and swivel it around but sometimes I cannot even do that, tucking in clothes is hard and buttons well that's a def no the dexterity in my hands is terrible I find it hard to hold anything even getting money out of my purse is hard as the grip is not there, these problems affect us in so many ways, I am finding it hard remembering when I was well now a days, michelle