In my 2nd week of reducing from 11mg to 10mg - going well so far, only a few shaky moments, until today - ; I felt fine when I got up but mid morning started feeling more shaky and generally unwell - dizzy at times, lacking in energy, and a bit faint. Have eaten properly so not that, and I am not dehydrated as I have had a few extra glasses of water. Dr said B/pressure was ok when she tested it recently
I seem to be normal some days then reminded i'm not by a wobbly day. No pains anywhere though so that is good. I have noticed I seem to feel at my best during late afternoon - is this common with PMR taking steroids? Oh dear....... can anyone reassure me???
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suzieh
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I think what you are experiencing is pretty standard for many. I'm not sure there is a consistency of symptoms across all PMR sufferers but many, including myself, will tell you that they have similar experiences.
trish 29 saying hello to Suzie, first I would like to say Well Done on getting down on the Steroids .I wish I could get down that low again and I've been trying this time since January this year. I feel that the symptoms you are getting are normal for PMR sufferers when they are reducing as I got a lot of these symptoms over the years while I've been on my reducing plans.
Like you I usually feel my best in the afternoons after a nice rest and that's when I feel like the old me before PMR. To help with the low energy levels I drink Lucozade and camomile tea. You haven't said how you are reducing because maybe 1mg is too much and maybe you just need to take it slower.( say's me ,who keeps on trying). We are all individual but PMR seems to have a mind of it's own and keeps reminding us with all it's horrible symptoms . I hope that things improve for you and take care. Pat. ( Trish 29).
Thank you for your reply - I have some 1 mg tablets so could try chopping a few in half and trying a smaller reduction (assuming chopping them gives an equal dose?)
My Dr has reduced my thyroxine recently and I wonder if this is adding to my problems? Blood tests seem to indicate I should be alright but who knows???
Hi Suzie , it's Trish again . It's worth a try cutting the Img prednisolone and going a bit slower at tapering down. My Gp gave me permission to do this and if you feel better then start on reducing on Img again . I don't take anything else to help me reduce but hope that when I see a new Rheumatologist in July that I may be put on a new reduction plan. This PMR journey is a hard one. My Partner needs a medal to live with me at the moment, my pain level and PMR symptoms makes me so tired and snappy. Good luck and I hope all goes well!! I shall be watching the Blog with interest.
Hi Suzie Below 10mg I have only reduced by 1/2mg at a time and usually stay on that for 4-6 weeks. I bought a pill cutter which was only a few pounds. Remember the coated tablets cannot be split. Wishing you well
Thanks for your advice. I think once stabilised, I shall stay on 10mg for a few weeks - hopefully will then feel well for my holiday in Italy at the beginning of July. we hope to do some sightseeing so I certainly don't want to feel faint or wobbly !
The next time I reduce will definately plan 1/2 mg drops spaced out much more slowly - I have felt quite unwell these last 3 mornings. Each afternoon about 5pm I have been feeling better and this has lasted until bedtime.
Hi Suzie, nowadays, on a low dosage, i reduce by alternating the new and old dose. When I went down to 2.5, I took 2 and 3 mg on alternate days; going down to 2, I have been taking 2mg for two days and then 3 for one day. Now down to 2. Saves the trouble of trying to cut tiny tablets in half!
Suzie - I found that below 5mg I was feeling exactly like you do just after a reduction. It wore off after a while. All my GP said is that it takes the body a while to adjust to the new dose. The only asnswer I found was to take the drops very slowly and stay on each dose for a couple of weeks after the faint feeling had gone. I also getting up after bending down made me feel very faint particularly in the mornings. You can take different doses on alternate days eg 10 then 9 then 10 etc which might help you to reduce more slowly.
Have had 3 yuk days in a row - very wobbly and faint feeling in the mornings - hope tomorrow I feel more like normal. I take the pills at about 9am and start to feel odd about 1 - 2hrs later - I guess when they have been absorbed and start working
I wonder if splitting the dose say taking 5mg at 9am, then 5mg a couple of hours later would make me feel better - or would this totally confuse my body?
It is probably withdrawal symptoms, which no medic's rarely talk about. They generally kick in about 2 or 3 days into you taking a drop, which should never be more than 10%. If the withdrawal symptoms persist then the drop is too soon and to continue on with it can and does lead to a flare.
There is a way of avoiding these problems and a good few people over the last 4 years have tried it and it works.
It is a bit long to explain on here, so send me a PM. 10mg and 5mg are stumbling blocks and there are two different patterns, one for 10mg down to 5mg and then 5mg to zero.
ESR & CRP are guidelines, some people never have raised markers, it is how you feel that is important.
Thanks for your help - think I have sent a private message to you asking for the plan - if you don't get my request please let me know and I will try again
If you have a moment I would appreciate your guidelines for reduction for both 10mg. down to 5mg. and 5mg. to zero. I have been reduced to 5mg twice in the past 13 months and ended up with too much pain/discomfort, so had to jncrease the Pred. each time. I have a tentative relationship with my Rheumatologist as I have not had raised markers since the original diagnosis when I first was hit with PMR. He keeps telling me I do not have PMR and am not experiencing flares. I KNOW I have PMR , I have all the classic symptoms and am relieved by Prednisone as long as it is at the proper level. He does not have an open mind about how to reduce the Pred. He basically goes by a 1mg. a month reduction once you are down to 5 mg. even though I have suggested I try the alternating days routine. Perhaps I should look for another Rheumatologist. Thank you for your help. I am so very grateful for this forum. I live in the United States and there is not much support for or knowledge of PMR .
I live in the US too they really don't know much about PMR here and your on your own they just want you off of predsisone has fast as possible and if you are a diabetic like myself thy reduce meds in big steps 5 mgs at a time.then your in pain like you were in from the beginning of PMR. I don't know what I would have done without this site for help and support and understanding. I thank you everyone.
Hi Smiley... you are absolutely correct, the primary concern of the Dr. is to get me off Pred. as soon as possible. Frustrating isn't it? This site is so very helpful ! Hope you are doing well.
Hi Merk, I live in NYC and agree. I have GCA and it took four months to get it diagnosed. I was "too young" and had only one marker, a high c reactive protein. Well that's the marker. They actually refused. I have the records, saying I "had a migraine" and they "stopped my worries that it might be GCA" -- - -- ! My neuro surgeon at Mt. Sinai, saw these records and said, he thought I may well have GCA and could he do a biopsy ? "Well, Yes" I said.
Yes, I had the enlarged macrophages, the cell walls had burst -- and I was in a "flare". I lost some sight in my left eye, peripheral vision. Was put on 100 mgs, first of prednisone, then after two days sent home with 60 mgs.
At first, major problems with doctors. First rheumatologist, so blase, "don't worry, it'll go away". Well it didn't and I was having real trouble with the high doses of prednisone. Went to several doctors. One good doctor, but connected to Mt. Sinai and he too, kept minimizing the diseases and the prednisone problem. He did say I was exhibiting Cushingoid symptoms from the pred. "Well, thank you!".
Kept trying, was hospitalized three times since. Have at least three major arteries dissecting, my (new) thoracic surgeon says the GCA is systemic. It is life threatening, if one of the pseudo aneuryisms that have formed from the dissections breaks off or moves upwards, major trouble. They are good and every three months, they do a cat scan on these arteries.
My sense on the American doctors is they can't be "heroes" with this and give you some prescription and you feel better. and they don't know how to do the reducing with prednisone. They give you the prednisone and tell you to reduce it to a certain level.
Prednisone and the adrenal glands are very tricky. I have had major periods of absolute exhaustion and "what is going on".? I have read, researched, one or two good doctors -- the adrenals stop working when there is over -- I think -- it is 7 or 8 gms of synthetic pred in the body. They assume, they don't have to produce cortisol, is my understanding. and then if you stop the pred., they don't just pick up and start producing the cortisol. It takes awhile before they start to produce the cortisol, if they do at all. Some get Addison's disease, which means they really aren't working and you have to take a certain amount of synthetic pred for the rest of your life or your organs won't function.
I really wasn't too happy with that. The anti inflammatory diet helps the inflammation, so you can reduce the prednisone. This blog has one or two very good methods of slowly reducing the pred, so that hopefully the adrenals will start working again. The point is, I think -- the adrenals will begin again to work, and a little of the pred, keeps the disease at bay. Carefully, it can be done. Have been following it and it seems to be working.
These are very serious and sometimes life threatening diseases, that need to be taken seriously. They used to be considered diseases of old age, and weren't taken too seriously. People are now being diagnosed with these at younger and younger ages. I am 61 and may have had it since I was 59. There are some who are younger and are diagnosed. And we intend to live for quite awhile.
Would absolutely find another rheumatologist. And if your internist isn't taking this seriously, would go to an another internist. I had been with my internist for about six years. My Ear, nose, and throat doctor told me to find another internist, when he saw that they hadn't biopsied, after the high c reactive protein and my asking them to do a biopsy. And that they hadn't taken this seriously.
"Less than optimal care" was his description of the care at Mt. Sinai, with this. Have to remember, that with this, it is "you", not the doctor's ego, career, or point of view, that counts here. It is "you" and you have a serious disease that needs to be taken care of. Part of what I realized, as I was dealing with this. And part of what my very aware ENT doctor was conveying to me. With the loss of some eyesight, I got his point. Please take care, search for a rheumatologist, and I wish you health. all my best, Whittlesey, NYC, U.S.
I believe it may be the adrenals, not functioning at their best level, possibly thyroid. I have had low potassium and magnesium in the blood tests, at times. But the recurrence of the dizziness to the point of faintness, makes me think it is the adrenals.
When I was taking the methetextrate, this went away. Methetextrate is a strong anti cancer drug and we dosed it down, until I am not taking it now. I don't want to be taking major medications such as that. It did seem to get rid of the faintness and dizziness. I think someone suggested, it could be a little of the disease, and the adrenals, not working well. I usually take an extra aspirin, herbal teas, water, and now I use ginger, with a little bit of honey. The ginger seems to help. If it continues, I sometimes take 1 or 2 extra mgs of medrol (I don't like to do that, I'm at 3mgs and want to go lower). That seems to help. Hope you feel better.
Thanks for advice. I seem to have lost the dizziness in the last few months and no longer seem to feel faint. I hope it is a sign I am recovering. Currently on 4.5 mg so very pleased as I am on the way down. My weight is reducing too as the steroids go down ( eating the same so it must be the steroid reduction). As usual hope my experience helps others. I stilI gain a lot fro this support group!! Hope you feel well and are recovering.
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Agitation when reducing
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Reducing the dose
