ilcraque
56 posts
Jul 07, 2010
4:55 AM
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Greetings to all!
I would appreciate reports of those of you that experienced relapse while tapering prednisone.
What i'm interested in is the following. Is there direct corelation of tapering prednisone and relapse (meaning: if you are on 20mg EOD and you lover to 15mg EOD - HOW MUCH time does it take for the relapse to become evident (the symptoms worsen)?
is this negative effect instant or it comes with a lag (say a week maybe more)?
The reason why I'm asking this is because I have a feeling that often there is no clear cut, and sometimes patients interpret temporal worsening as a relapse and hence stop the taper...
I hope i was clear.
Best regards;
Tom
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http://ocular-myasthenia.blogspot.com/
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ragdoll
355 posts
Jul 07, 2010
5:09 AM
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How do you know if it is temporary or more 'critical' There is no way to know this, so you make a judgement call. I, on many occasions experienced symptoms on reducing steriods, I never thought my condition had worsened, just that
either: my body was adjusting to the reduction
or the level of steriods or overall medication was too low to maintain the level of functionality I required.
If I thought the latter I would increase my steriods for a short period and try again and/or reduce my level of functionality.
However my body would tell me when it was ready to handle the next reduction, which I learnt over time.
I always had a prompt reaction to steriod reduction (or not) as the case maybe, either within hours, days, weeks or months (the period of reaction got longer as my condition stabilised).
Actual relapses were generally due to other factors as well as too rapid a reduction of steriods.
Last Edited on 7-Jul-2010 5:15 AM
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rick11
28 posts
Jul 07, 2010
4:54 PM
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Hi Tom in my two years with MG i have had three times when i have been able to stop my prednisolone and mestinon altogether the first time lasted three weeks before my symptoms started again the second time lasted over four weeks and the last just over three months. It takes me just over two weeks for the prednisolone to start working well again and the mestinon works strait away although the effect is short ie three hours each dose. I am hopeing these continue to get longer over time and eventually i hope for a complete remission but we shall see all the best Rick
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pam2507
155 posts
Jul 08, 2010
1:05 PM
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I am slowly, slowly , slowly reducing my steroids, now down to 6 mg eod and no other medication at all. I have sometimes noticed very slight myasthenic symptoms during my reducing journey but find if I stay at the lower dose for a while, (months sometimes) I stabilize and can then reduce further. Hope this helps
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ilcraque
57 posts
Jul 11, 2010
3:28 AM
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thank you all for replying; you've been most helpful.
best regards;
tom
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http://ocular-myasthenia.blogspot.com/
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Randi
2 posts
Jul 11, 2010
4:36 AM
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Thanks so much for asking the question! I have been wondering the same. I have been trying to reduce for months now, but every time I drop, my body doesn't cope well and I don't know how much I am to accept. I have come down from 50 and I'm now having weekly IVIG, and on 20mg of steroids, but am having breathing difficulties and muscle weakness. I don't know why the IVIG isn't lasting longer. Has anyone else had this? I want off the steroids. I am so sick of the weight gain, insomnia, irritability. I know I'm much better than I was, but I still have so far to go.I've been on steroids since Feb. How much longer is normal?
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ragdoll
358 posts
Jul 11, 2010
5:45 AM
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hi Randi,
Is the steriod 20mg daily or eod? It took me 5 years to come off steriods, it was a long slow battle.
Do you have a full dose of IVIg weekly, as that sounds like quite a lot if you do.
I found IVIg lasted 4-6 weeks and symptoms would start to recur after a couple of weeks.
It is normal to want to ditch the steriods quickly but generally all treatments are slower acting and/or not or less effective (except IVIg or plasma exchange).
To answer your question, normal is different for everyone, its not a disease that can be easily predicted.
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Randi
3 posts
Jul 11, 2010
5:54 AM
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Hi there! I am on 20mg of the steroids daily. I have 27grams of IVIG weekly. I think that's a full dose. Not sure! And I don't know why it doesn't seem to last either. I am also taking 150mg of Imuran and using mestinon "as needed."
I am so frustrated with everything! I just feel like with all this treatment, I should feel better! I'll have a few good days and then I am so out of breath. I can't exercise because my muscles are weak,so I can't lose the weight that I keep putting on with the steroids. ARGH!!
I will be happy when I am in or near remission!
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ragdoll
359 posts
Jul 11, 2010
6:05 AM
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IVig is calculated on body weight, we need Levitas to tell us if this is the full amount (and your body weight)
Don't expect remission, I have not reached it in 11 years so you may be disappointed if you expect that and it doesn't occur.
The Imuran can take up to 2 years to take effect, it had no effect on me and it was discontinued and another drug (methodtrexate) tried instead.
The IVIg is a known short term solution. The level of steriods you are on, IMO is not enough to control the symtoms which is why they recur so quickly.
Last Edited on 11-Jul-2010 6:05 AM
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marjorie
70 posts
Jul 11, 2010
2:50 PM
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yes ivig is measured on your weight.<80ks)
1'm on 30 grams 2x12 2x3gram bottles and it takes 5 hours to drip through at 120 the slower it goes in the longer it lasts so my nuro told me when i first started. i am on 3 weekly now and take 13 mg of pred 150mg inuram the morning.plus all my other pills for different things,
i have been on pred for 5 years now but the highest was 25mg have only been down to 5mg for 6 mths then had problems not medical and had to go back to 15mg and now trying to go down 1mg in september when i see my nuro again
i have to travel from the gold coast to brisbane for my treatment and that takes 2 hours each way and my appointment is at 7 30am in there intro venis treatment ward
cheers marjorie g/c australia
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Randi
5 posts
Jul 12, 2010
5:49 AM
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Thanks so much for the info. Do you find the methodtrexate to help? I am going to ask the neuro dr next time what the foreseeable plan is. I just don't think I can handle higher steroids now. The insomnia and mood swings were making me crazy! It would be nice if there was some other drug with less side effects!
Have you had a thymectomy Marjorie and Ragdoll? I had one in March,but obviously nothing has happened yet?
Here's hoping for some improvement soon!!
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ragdoll
361 posts
Jul 12, 2010
5:58 AM
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There are other drugs, but of course they come with their own brand of side effects. It was the methotrexate than finally stabilised my condition. That kicked in after (12? weeks) timings are a bit hazy now, it was 5 years ago.
Yes I had the thymmectomy - did nothing for me. (March 2000)
I am actually missing the steriods, my body feels weaker and I am suffering from joint pains now!!
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marjorie
72 posts
Jul 13, 2010
2:55 PM
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no i never had a thymectomy as there was nothing unusual on the xray also i was over 65 and they said i was to old to have it done anyway
my last ivig went in far to quickly as the machine which regulates the drips wasn't working.
so the nurse just counted out how many it would be and altered it for manual and insted of taking 90mins to drip through it took just less than 60min
i was out of the hospital an hour early and it doesent seem to be working very well the eyes dont open after taking the first dose of mestinon at 6am
and only remain half open all day long with taking mestinon 4 hourly during the day.
so i hope it works better next time on the 28th of this month
marjorie g/c australia
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