Hi everyone - I was diagnosed with Systemic Sclerosis earlier this year and am suddenly feeling really crappy after my usual visit to the gym. I usually do about 30 mins a day, a bit of swimming, some light weights and my favourite Aqua Gym class. I’ve been doing this few years on and off and although it has been hard at times I’ve always felt better for it. Managed to change my hours at work so I can rest for a awhile before going in and my job is desk based so that also helped with recovery and the fatigue.
Once diagnosed I was put on Hydroxychloroquine which really helped with the fatigue. I had to come it last week as I came out in a red lumpy itchy rash. Now I’m off work feeling like my glands are up my throat, shivery, cold, joints ache and generally exhausted after 2 days at gym.
I’m waiting to hear from Rheumatologist as to whether I should restart the Hydroxychloroquine at a lower dose - I was on 400mg but my GP thinks maybe 200mg would be better. Any help or insights would be appreciated.
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Cubbikins
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Sorry to hear you are not feeling well. It could possibly be a viral infection, a flu type of thing that has got nothing to do with your SS? Whatever it is, it Sounds like you need to take some time out to sleep and try and recover
I came out in a rash when I started hydroxychloroquine but it turned out to be related to the condition.Do you have a good rheumatologist? Also I started to get tired and out of breath when walking all of a sudden and that was due to my lungs being infected .Make sure you have all the necessary tests. Good luck.
Hi there, the exercise is a red herring. You feel rubbish because you are either having a flare of your disease, or have an infection or virus. If you had been on the HCQ for quite a while then it could be related to stopping that, although generally it would take a few weeks to get it out of your system. If you had only just been put on it then it might be that your system is just reacting to it.
Speak to your Rheumatologist and tell them about your experience so they can advise about appropriate treatment.
Don't be exercising when your system is under stress. you need to rest up and wait to feel better. Look after yourself!
Hi there, sorry to hear you’re feeling rubbish. I get ridiculously tired and like you visit the gym regularly. It could be viral although, I was prescribed Hydroxychloriquine about a month or so ago and suffered a delayed allergic reaction, itchy rash all over and face swelling. My rheumatologist did say that a rash is a typical adverse reaction to the drug, so maybe worth discussing that.
Evening everyone. Thanks for all your replies. Rhuematology recommends going back on Hydroxychloroquine from tomorrow but at the lower dose of 200mg per day. If the rash returns I will have to come it and look at an alternative. Recommended I should start taking Nifedipine at 20mg per day as well. Before all this I was taking an antihistamine tablet once a day now feel like I’m on some really hard core medication which feels a bit scary.
I am feeling a bit better than yesterday but still feeling rubbish. Hopefully the chocolate from my other half will help. Once again thank you for your replies and support X
Hi there, HCQ is the mildest drug they give you for the control of your disease...and you are going to be on a low dose. Equally low dose nifedipine is nothing to be worried about either. Please be reassured that you are on nothing hard core at the moment.
Thank you LucyJean and Crenellated. I do feel better in myself and more positive this morning. Think the chocolate has definitely helped and being in touch with others who are offering support too. I’ve taken both meds this morning and I’m just going to get on with day x
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