Wednesday, 4 December 2013

Survey results: steroid usage in MS

Steroid usage survey; more work needs to be done to communicate the potential side effects. #MSBlog #MSResearch

"The majority of MSers in this small survey have received steroids as a therapy. I note the intravenous route is the most common; this is interesting as there is good evidence that high-dose oral is just as good as high-dose IV. I am surprised that the majority of you felt the side effects of steroids were not explained to you adequately. There appears to be a recurring theme in that MS healthcare professionals don't seem to communicating information to MSers in a way that they can recall it clearly or not at all. Something needs to be done about it. If you are interested in reading about steroid use in MS I suggest you read my early clinic speak post on the subject."

"Please note the numerous side effects that are attributable to steroid use in MS. This must be countered by the observation that most of you responded to the steroids you were given. I am pleased to note that an oral taper of steroids is not frequently used; in my opinion this simply increases the chances of side effects and complications from the treatment."




Comments from the survey:
  1. My only experience with steroids was shortly after being diagnosed with PPMS and suspect this was a rather desperate measure, as nothing else could be offered. Utterly pointless and not something I will repeat.
  2. That's 5 doses in 15 years. I have good calcium levels. 
  3. The first few times I had rapid improvement and relief. The last couple of times assisted but not to the same degree as the first 3 or so times.
  4. If steroids are only really advisable for a severe relapse to help speed recovery, and you have to take them at onset for effectiveness, but you don't know at onset how bad the relapse will turn out to be, should you take them or not? 
  5. The first time I had IV infusion the neuro insisted on it being administered in hospital; the steroids had no positive effect and five days in hospital made me feel a lot worse. The second IV was administered as a day patient which was better but still a lot of time travelling and sitting around in a ward with, again, no positive effect. Third time was 500g tabs orally at home; much better than hospital but side-effects were worse: hot, "tight" face, insomnia, dizziness, bloating etc. Still no effect on relapse. I wouldn't take steroids for relapse again.
  6. Over the 40-year course of my disease, I have used steroids both orally and also infused intravenously over a few days. Your survey did not allow me to choose both so I chose oral. I have had about eight oral treatments and two intravenous treatments. The survey also did not let me say that I had varying results from the treatments. Sometimes, they were highly effective (especially early in the disease) and sometimes not effective at all. The latter was increasingly the case. I no longer accept steroid treatments.
  7. When told of emotional lability, I didn't understand the depths until I literally laughing at myself for crying watching Will Smith in Independence Day. I was doing both at the same time and could stop nether. 
  8. I am prescribed Dexamethasone for relapses, not the above steroid.
  9. I'm not sure how much value a "null" return is, however, I would like to say that although I've been "made aware" of the availability of steroids, I've never actually been offered them, and feel the onus is on me to push if I wanted them. As I share concerns about the risk/side-effect profile, especially in the light of the fact there's no evidence they improve the long-term prognosis, I've never felt inclined to do so. I feel I would only consider them in the event of a seriously disabling relapse (e.g. can't walk/can't see). I'm not interested for minor to moderate relapses.
  10. I have declined courses of steroids in my last two relapses because of the side effects and lack of clear / positive improvement in the relapse.
  11. I only had an oral taper once. I would take steroids again in a flash if I had a relapse. The first two times were for a real exacerbation. The third time it was a pseudo exacerbation - I had a bladder infection and had no symptoms. I now know that if I start to lose my balance for 24 hours, I should go to my family physician first. Since I never have typical symptoms for a bladder infection, losing my balance is the only sign I have that something is wrong.
  12. When I had the IV steroids in hospital, I was not warned about the stomach problems and had indigestion frequently. When I had oral steroids I had the benefit of the information leaflet so felt much better informed. I had a further relapse 3 months later but actually rejected the offer of more steroids as the relapse didn't feel so severe and I didn't want the side effects again.
  13. I just had my 2nd relapse after 12 years with none I was admitted to Hospital aas in Acute Exacerbation due to a severe UTI which I didn't no I even had as no symptoms. I was put on Solumedrol 1000 mg X 5 days via IV drip. After 5 days I was discharged & sent home via Taxi @ 8:30 pm on 08-30-13. The following evening @ 11:45 pm I had a Heart Attack admitted to local hospital through ER to ICU. The next morning I was sent to same hospital I just was discharged from via Ambulance as 10:45 am Cath the Dr. Cardio found a 20 % blockage @ the very end tip/tail of LAD also a Blood clot in LAD vessel. The Dr. Cardio wasn't to concerned with the 20 % blockage as really no blood flow lost. Cardio Dr. was most concerned with Blood Clot I was admitted & putt on high doses of blood thinners & Blood clot busters after 2 days Dr. Cardio did angio through right wrist placed mediated stent he then went through left groin X 2 sites to remove blood clot that in fact busted up. I'am so sick from to much Solumedrol I have many of the bad side effects. I was discharged .on 09-04-13 & sent home. I have never in my entire life felt so Bad.& sicck with muscle soreness in my entire body it feels like I was beaten with a Baseball bat. Thank you for allowing me the opportunity to participate in this survey.
  14. I was having a terrible relapse. After the 3 days of steroids, symptoms were gone within a few days. I had my life back.
  15. IV steroids following dx during prolonged disabling relapse in 1998 - wish I'd had them sooner because I didn't make a full recovery, whereas I have made a full recovery imo following subsequent (disabling) relapses when I've taken early action - and I know the official line is that they don't make any difference to outcome but I disagree.
  16. Oral steroids early during disabling relapse in 2002. Full recovery but relapsed again very soon afterwards.
  17. I've not taken steroids since due to concern about side effects. 
  18. Not worth the awful side effects. Caught a terrible chest infection then had another relapse. Never again! 
  19. It is hard for me to say how I responded to infusion. I might have recovered eventually without them. I did however experience the sudden ability to walk again after infusion. Something that is interesting to me is that the MRI of my spine while in hospital (and unable to walk) showed no spinal lesion and minor brain lesions. But the follow up MRI 3 mths later showed up a spinal lesion. So it makes me wonder whether there is a delay in the lesions showing up on MRIs after a flare. 
  20. When I was prescribed steroids, the side effects were not explained to me. The neurologist told me I would be dancing around the next day and they sounded to be a miracle cure. Obviously, this was not the case and I couldn't understand why I was getting worse each day. I felt totally confused and depressed. If they are offered again, I certainly won't be taking them. 
  21. In my wash out period from Tysabri to Gilenya, I spent six months with a intravenously dose, once a month, to get relapses "under control". No more relapses on Tysabri-wash out and Gilenya. 
  22. Oral prednisone upon diagnosis in 1995. None after.
  23. After the first appointment with my neurologist two years ago, I was given IVMP over 2 days as well as MRI and VEP tests to assist an initial diagnosis of RRMS. The steroids had no effect other than mild insomnia. I have never had an episode that I would describe as a relapse, rather my symptoms have slowly worsened over many years. We have agreed to try non-steroid treatments to relieve the symptoms. 
  24. I have had 2 IV steroid courses. Both times, I had been having overlapping/back-to-back relapses for about 4 months before finally deciding 'Oh sod this,' and accepting the neurologist's offer of IV steroids. Both times, the steroid course marked the end of the barrage of relapses for another year. Was it the steroids that finally halted those relentless series of relapses in their tracks, or would that have happened anyway? No idea. But I was grateful for the respite, whatever caused it! 
  25. I am never in any rush to go for steroids (whatever the evidence says about that) but it is awfully nice to know they're there. The neurologist has never been in a rush to start steroids either - I have never had the impression that he is reaching for the prescribing pad just so he can look busy. All this was a few years ago - Tysabri has kept things mercifully quiet in recent years.
  26. I have been treated with steroids only when I requested it, which I only did if I was having a relapse with optic neuritis. 
  27. I hate IV Steroids. I had horrible veins. Now they appear better as I have been on Tysabri for 22 infusions. I am JC virus positive and now have to come off of them. In the past I had my infusion and come back to work. I'm always flushed and get a headache. I sleep good. I could stay in bed for the entire course of treatment. I agree to them as I feel they will help me, however I hate them and I'm not happy about going back on them. I do like walking though and will do what I need too.
  28. In the 18 months since my diagnosis i have had 3 serve relapses. I have taken steroids for these and have found a huge increase in function almost immediately after. 
  29. I view steroids as a last resort and have only taken them when loss of function has become debilitating. 
  30. I did my own research and i would never want to become reliant on these at such a high dose. the side effect outweigh the benefits in my opinion. 
  31. Staff in local hospitals don't seem aware of the side effects, you aren't told you may not sleep or drive erratically. 
  32. On occasion I take 50 mg predinsone for some days prn. this is at my discretion. i have also taken other doses (10, 20, 40mg daily) for holidays, fall/ spring gardening & take this dose for a week or two. more importantly, i use testosterone to counter the effects of the prednisone, and to increase daily energy, and general wellness. fyi: i'm a 53 year old woman and don't lose ANY sleep worrying that my genitalia might get bigger (would you?) i'm insulted by the risks i hear about the androgen treatment. these alleged risks don't compare to what i already have - and i feel much better, eg, my exercise is so much fun and still rewarding. 
  33. I don't know if the dose was a high dose but I did feel much better.
  34. Not worth it - I will never take them again.
  35. After the first presentation with 'labrynthitis' & assoc symptoms I have had mostly sensory relapses so would not have needed steroids. Last relapse had some leg weakness as well as pain & sensory symptoms. Neurologist saw me at the beginning of the relapse (it got worse). Did not mention the possibility of steroids and I did not contact him when symptoms worsened (partly because they are not very interested) but also I would not have wanted steroids. too many side effects and not enough evidence for benefit. A bit like some DMTs!! 
  36. it has been 7 years since i have been diagnosed. if i had to guess i would say in the past 7 years i have had IV steroids twice a year maybe three times... 
  37. On the response question - it was force choice so I had to nominate one, I have had 3 courses in 9 years, the first made no difference, the second was excellent, the symptom has not returned - the administration was 2005. The last course January 2013 did a lot of damage - muscle weakness, atrophy, still an issue. the first two doses were 500mg over 5 days, the last dose 1000mgs over 3 days - too much - elevated blood sugar and BP. I did tick excellent in the result box, but I could have easily ticked the most adverse option. 
  38. Pot works for M.S so why do they try all these other things. 
  39. Suffer from acute leg inflammation and edema from the knee down. Legs are very sensitive to touch. 
  40. The steroids (5 days course) always have an immediate effect which makes me feel better than i have for over a year. After the first few days this then reverts back to a normal state and once i finish the steroids i then feel weak and lathargic. This reduces over the following 2 weeks and i then feel back to normal, but have to make up for the lack of activity for the 3 weeks its taken to run the course. 
  41. In 1980, I had oral prednisalone for optic neuritis and found it a great relief. Dosage was tapered. In 2003, I had 3 days of infusions and did a Lazarus after the second day. A month later, I stopped walking again and then got a further 5 days' infusions, which seemed to have little effect. A week after that, a rash appeared on my forehead that seemed to be infected from the start. In 2004, I had a course of oral steroids, which I don't think did much. Six months after, I started Avonex, which I took for 5 yrs, then moved on to Rebif. The only relapse-type event I've had since 2004 was caused by surgery, not neurology, and was not treated.
  42. I've been given the oral steroids but have chosen not to continue as the weight gain combined with the easy bruising has made me feel like I just don't want to bother with taking them. Have asked if there is an alternative to the steroids for MS relapses. 
  43. When I had a taper, it was over a one week period only.

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