Side effects

Posted , 3 users are following.

I have aching calfs  and shortness of breath weight gain and many more have been back to GP gone down from 15 mg to 10mg as I feel really unwell after only 4 weeks on them .

is this normal as I have had multiply lung clots and dvt and I am really worried about the shortness of breath taking them for lupus and poly is this normal concerned !!

0 likes, 4 replies

4 Replies

  • Posted

    my experience from steriods is that i felt much better after a day with taking steriods ,and think a lot of people on this web site has also had same expertience .have you read the site that for lupus and dvt ... is that polymylgia ? look on them site .have found this site gives lots of info and feedback from people with same illness .hope u get sorted .i have been on wrong meds as now diagnosed with something diffrent ,so go and talk to a doctor if you not happy found someone who you are happy with
  • Posted

    Shortness of breath and palpitations are side effects. I cut out gluten and simple carbs to stop the moon face which worked for me. I have found if you eat the same as before, I put on weight, I am now a real bore about diet and nutrition since starting taking steroids.

    If you are feeling unwell with the steroids I should talk to your doctor, the idea is to make you feel better. 

  • Posted

    Prednisone is a widely used & often produces remarkable results quite quickly. My own mother has recently gained in strength, alertness and mood after starting on Pred. I think it's about 3 or 5 mg. and has changed her life for the better. I've been on a similar dose since Lymphoma a dozen years ago, (I also have some form of Auto immune problem which has been diagnosed as several things, from Lupus to 'connective tissue disorder' and several others. The Pred seems to do nothing much. However if I have an event or I'm feeling particularly bad, I can opt to take the big dose (either 25mg or even 50 each day for a few days (usually 3). The difference is stark as I can talk, walk, and function like before Chemo or cancer. I don't feel superhuman or any kind of high, just closer to how I was normally It's devastating to come off 3-4. days of feeling human to go back to dazed, weak, uncoordinated, tired and useless. But of course I must do this as taking that dose anything other than a few days every month or so will surely kill me dead. The big concerns are deterioration of my vision, and crumbly bones like chalk as well as being a dead person. Annoyingly, I can't drive it from my mind as my eyesight, though retreating just a tad as is normal I'm told as I'm 50. I can still see very well, better than most 'normal' folk, except now I have to hold the tiny instruction or ingredient label a foot or so from my eyes if light is poor. Besides, as an artist I do kinda need the old ocular spheres! Also my bone density is fine (especially cranially), and neither I nor anyone in my immediate family has ever broken so much as a finger, ever. The big worry here is that returning to a lower dose or dumping the stuff doesn't repair any damage caused. Otherwise I'd just bite the bullet & stay on 25 per day. As things stand I could probably get 10 good years as a normal person my age then suffer the consequences later, or I could hang around for 20 as a useless basket case who is only a burden to my angel of a wife who is constantly looking after me. Which course would you (all) take were u in my incredibly painful shoes, (incredibly painful nerve damage in my feet is the worst part of the damage the chemo did - the background level -24/7 is about a 4 on the scale, the attacks,-several per week, push 10). Preds don't seem to shake that pain, but on the higher dose I seem to have less of them)

    • Posted

      I do agree steroids work wonders. I have been on them for two and a half years and seem to have picked up several of their side effects which can be a pain, but at least I can be pretty human rather than in horrible pain and unable to move much. Did you have a Dexascan to check your bone density?

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