Hi, all,
Last week reduced steroids from 12.5-10mg,
and many of you kindly answered my questions as I was feeling quite ill.
Second week now and have had a bad headache, my Consultant doesn't think it is Gca, relief, but I explained the symptoms I had last week and he isn't convinced I have
Pmr.
He said reducing steroids from 12.5-10 should not make feel ill, and as my bloods are normal, he is going to take me off steroids quickly.
Totally confused.
I see him Thursday and I am not happy.
Please advise if you can, does anyone have similar symptoms to me when reducing, ie fatigue, aching, and unwell.
Hi, Every time I reduced steroids when I was on the higher doses I felt awful for a few days. Its been said so many times on this Forum that its not the results of the blood test that counts its how you feel and I would worry about coming off steroids too quickly.
Hope you feel better soon
Mary
I am sure that the majority of us have had fatigue, aching and felt rough at some time in our PMR journey. Fatigue is actually a symptom of PMR and also a fluey feeling. The pain goes without saying. Reducing steroids can also have a similar effect in the first day or two of reduction. Perhaps your consultant should try steroids for a few months and reduce.
As a rule of thumb a reduction of a maximum of ten per cent at any one time is recommended.
Have you ever had raised blood markers, about twenty per cent of people do not?
Hi Julia, So sorry to hear that you are still feeling unwell. I don't know what to advise really except that because of all I've learned on this forum I think it would be extremely unwise to come off the steroids very quickly as your Consultant suggests. Is this your GP or a Rheumatologist? Each time I've reduced, I'm now on 10mg like you, I have felt more tired and achy for a few days, and since reducing to 12mg (I originally started at 20mg) I have always felt a certain amount of acbing and stiffness first thing which eventually goes away after 2 to 3 hours. It would be nice to be completely pain free all the time but I am loathe to go back to a higher dose when I can cope as I am. I do still get very tired from time to time but am learning to cope with that too and pace myself accordingly. However, I wouldn't say that I have ever felt unwell as such and certainly haven't experienced any headaches. Maybe you haven't got ONE but I guess of you do come off the steroids quickly and all your pain and stiffness returns, you'll know one way or another. Sorry not to be of more help. Hope you get something sorted soon.
The word ONE at the end of my post should be PMR !
Hi,
Thank you for you're reply.
Very confused, my rheumatologist is quite adamant that I shouldn't feel the way I do when reducing steroids.
We shall see.
Hope you are well
Hi,
Thank you for you're reply,
I agree I think he should try steroids, reduction is not nice.
I am having another blood test tomorrow, beginning to feel like a pin cushion, my markers are always or have been normal.
See what he says when I see him on Thursday.
Hope you are well.
Hi,
Thank you for you're reply,
My rheumatologist is adamant that I shouldn't be experiencing these kind of symptoms, fatigue etc, when reducing steroids.
I have had the same symptoms every time I reduce.
As you say it lasts for a few days, and this has happened again, he wants me to come off the steroids as quickly as possible.
That I am not looking forward to, then if symptoms of pmr come back, I will have to start this nightmare all over again.
Time will tell, I will see what he has to say on Thursday.
I would rather have the facts and knowledge from this forum and people dealing with this, than that of a consultant no matter how qualified who does not have this condition.
Hope you are well
Julia, I contacted my gastroenterologist about the fact that, following coming off steroids, I always had a sudden hit of abdominal pain and diarrea followed by several days of headaches. He said it most certainly could be to do with the steroids. Even if I wean myself off, I still get these withdrawal symptoms. First I mentioned it to my chemist and he said I'd probably got diverticulitis. I won't be asking him for advice again!
My RA felt the same way, he had me reducing to fast. I started with 20mg last Dec, I had a couple of flares, and ended back at 20mg. He wanted me to reduce 5mg emery other week, way to fast. Then I told him about this forum and the reccomened reduction rate, he now lets me do it at my pace. I just went to 19mg, 2 days ago, after 8 weeks at 20mg, I will give it 4 to 8 weeks before I reduce anothet 1mg, depending on how I feel. Hang in there, it is a long haul, for sure.
Well he's wrong about the fatigue isn't he because it would seem that we've all experienced it. It seems that most GPs/Rheumatologists don't really understand the condition at all! Having said that, my GO is very understanding in that each time I see him he asks me what I would like to do and is quite happy for me to reduce as slowly as I want to, on the other hand he would be just as happy for me to go more quickly but certainly wouldn't push me to do so. II'v
Sorry pressed reply before I'd finished. Was going to add that I've told him I've joined this forum and he thought it was an excellent idea. Hope you get some satisfaction when you are your Consultant on Thursday.
Can you see another Rheumy? If this guy doesn't know that
fatigue is a big factor with PMR you need a more informed
doc......
Hi Julia
I started on 20mg September 2015 and my first drop was to 17.5mg over a 8 week and had a hell of a time but after 1 month i started to level off.
I am not a fan of my rumi but she does know her stuff when it comes to pain management and reduction. (Terrible bedside manor ) I now reduce only by 0.5mg and she thinks that's great, i was willing to try 1mg but she insisted.0.5mg. She feels better something than nothing, now at 16.5mg with long tapper.
I get headaches sometimes but mainly at the beginning of first on prednisone.
Each time I've reduced l get some of my initial pmr symptoms back but not as drastic thank god but once at the new dose it takes me about 2 months to stabalize.
I hope this helps, good luck.
Mariane Canada
I agree .. he has no clue about PMR and it's symtoms.. Good luck on educating him ..
Julia, why don't you try to go back to 12.5 for a few days? If your symptoms are from reduction, then they should go away. If that is the case, then you should reduce in smaller steps, maybe 1mg at the time. In any case, you will know the answer before you see your consultant and have more productive appointment.
If I take 5 mg for five days, then stop, I sometimes get the same nasty symptoms. It must depend on our own stomach sensitivity.
I agree with Nick here. Go back to 12.5mg for a bit and see if you are feeling much better, then reduce much more slowly per month with far less bad syptoms. Good luck.
Hi my rhmy said the best way to reduce is slowley, ans she was so impressed with the DSNS method she took a copy for her patients.
So you are getting pain and fatigue when you reduce your dose and your "expert" tells you to reduce quicker. The more I read on these forums the more I'm tending to just ignore what the professionals say and carry on with my own program for managing this illness. I know how I feel and can adjust accordingly. Nobody wants to be on steroids but they are being used to help us with managing the pain and stiffness and therefor are an important measure in our recovery.
Personally I have just reduced from 12.5mg to 11.25mg slowly. (Alternating daily from12.5mg to10mg as I haven't got 1mg pills yet). I'm feeling stiffer than usual so will see how this week goes before staying here or going up a bit.
My Rheumy tried to put me on Alendronic acid (spelling?) to help with my bones. I mentioned that I hadn't had a Dexascan scan and she told me that they don't do them! She wanted me to take MTX because I was having trouble reducing my Pred. At that time I had gone down from 25mg to 15mg in 4 months and thought it was going fairly quickly so I tend to just do my own thing.
Good luck with your journey and read everything on here as you'll get more pertinent advise here than anywhere else.
Ron.