Trouble exercising and feeling cold!

[Sallyb828]

Hi, I was diagnosed a couple of years ago with seronegative inflammatory arthritis in my hands and am currently taking sulfasalazine and hydroxychloroquine, however I just wanted to ask if anyone has similar problems to me as I'm still learning about the condition-

1) I don't suffer too much from excessive swelling in my fingers usually (I always think I should have more obvious swelling with the diagnosis but it's more painful joints that affects me?) however, if I do exercise at all (especially running), they swell like sausages and I struggle to bend them?! Does anyone else react like this?

2) I always have freezing cold feet- even though the rest of my body will be warm, my feet are always like blocks of ice? Is this related to the condition?

3) Roughly every few months I will have a fever- it's always only ever at night time but I will be dripping wet with sweat but feel freezing cold and shivering, again does anyone else experience this as part of the condition?

4) Lastly (sorry!!) My consultant would like to swap me to methotrexate when the coronavirus settles- can anyone just give me their advice on how much more this will effect the immune system? Will it be an obvious change? And how much more vulnerable would it make me?

Thank you so much, stay safe everyone xx

[Smelliott]

I'm also seronegative. With regards to 3, yes, night sweats are definitely part of my experience. I sometimes wake up drenched & freezing. My poor wife. Generally when I'm in remission this doesn't happen though.

4. In terms of methotrexate, it varies from individual to individual, but I've been on it for 8 years now and don't feel as if I'm particularly more susceptible to illnesses than anyone else I know. No side effects either. Hopefully that will be the case for you too, but I think it's generally a question of trying things out and seeing how they work for you. With regards to vulnerability, it's really hard to say. The official advice suggests that its likely to make you more vulnerable, which makes sense. Sorry I can't be any more help than that!

[Sallyb828 in reply to Smelliott]

Thank you for the reply, it's very helpful

Yep the night sweats are awful, I'm the same, will literally be drenched but shaking from shivering so much!

Good to hear your experience of methotrexate (I know everyone will react differently, but just good to get an idea in general before going ahead)

Thank you again x

[Rashford20]

I suppose everyone is different and my experience is pretty much the opposite of yours. My anti CCP test exceeded the tested range at over 300 and my doctor said they have never seen that before. I get a lot of swelling but I feel like exercise actually reduces it. I actually have really warm hands/ feet (my partners is like a block of ice). I’ve never had a fever. I’ve been taking methotrexate and haven’t noticed any side effects whatsoever. Supplements like vitamin D/C may be able to reduce risk of colds etc. Complicated disease I suppose!

[cakenomore]

Hi Sallyb,

I have recently been diagnosed with seronegative or psoriatic arthritis, they can't make their minds up. It mainly effects my wrists, thumb and 1 finger.

I wake up soaked and some times have to change clothes 2 or 3 times a night but not every night.

When I went on sulfasalazine I noticed I felt cold when no one else did, especially in the early evenings. I actually took my temperature and it was very low. When I stopped the sulfasalazine that stopped but the night sweats haven't.

I'm going back on methotrexate but injection this time. Between the 2 meds I've found I have a lot less side effects with methotrexate, I think because I can counteract them with high doses of folic acid.

Whilst I wait for methotrexate I had a depo steroid injection. Its great,loads of energy no wrist pain or swelling. Such a shame that steroids aren't the answer. They always work wonders for me.

I hope this is helpful and you get on well with methotrexate you might find your temperature regulates better.

[v271]

Hi. With regards to the methotrexate....I’ve had seronegative RA in all my joints for 40years . I’ve been on lots of different treatments over the years. Methx has worked well , I’ve been on it about 20 years now. I haven’t noticed any problems with my immunity. However after a few years I started to have problems with severe nausea, couldn’t get out of bed for it ,2 days every week. Eventually a new consultant told me to take folic acid 6 days a week & it settled it all down. Apparently long term Methx can affect the B vitamins. Just something to watch for. Hope it helps you.

[Hidden]

Hi Sally.

When I exercise ( mainly walking these days) yes my fingers swell . Once I went on a longer walked and like you my fingers swelled so much I couldn’t grip my water bottle had to use 2 hands.

Nights sweats I get a lot especially when the disease is active this then accompanied by fatigue and stiffness.

Methotrexate is the gold standard treatment. Without effective treatment our disease becomes out of control and the repercussions is our body becomes damaged. If your disease is very active it your flaring we are putting our immune system under strain and hence more vulnerable.

[amatrx]

Good morning,

I'm going on 3 1/2 years with RA and I've been on several meds that have made me terribly sick. Anything from nausea, off balance, dizzinesss, acid reflux and fatigue. I'm now on the same meds you're taking and these are working better for me. I too have the chills, swelling in my hands, ankle and shoulder joints with severe pain and my finger joints lock at times. I had my first joint injection and it wasn't pleasant. I run a low grade fever most of the time which makes me so tired. I drop off to sleep very easily. I have to push myself to get anything done and I always have to rest when I over do things. I took methotrexate but it made me sick and I had negative blood work and was taken off of it. I do take diclofenac for swelling and pain. I also have fibromyalgia and it intensifies my RA. I take duloxetine and a low dose of valium for it. From my experience, you will always have some pain or discomfort. My best friends are Arthritis Hot and my heating pad. Everyone is different. What works for one may not work for another. It's just a trial and error. I've always been active and this has really been hard for me. I just take one day at a time. Hope things go well for you.

[NPBD]

I tried metho trexate and got a series of urinary tract infections, so had to stop. Back on Sulpha again.

[Brychni]

Sounds EXACTLY like me! From symptoms to diagnosis (thinking it's not that bad) the cold sweats...

[Brychni]

Should have said that my cold problems are because of Raynaud's I also have antibodies for antiphospholipid syndrome - whatever that is but I think it's connected. White fingers and toes were one of my first symptoms which started years ago.

[Brychni]

Also forgot to say that yes I too get the swollen stiff fingers when exercising. I get it when walking the dog, running and riding my bike. I used to think it was weird but put it ignored it. I realise now that it is the RA/PsA or whichever because it is starting to happen with the left hand now too.