I had gotten down to 9 mg after 9 months of reducing prednisone, but when I went to 8, everything went bust and all my pain came back. So I went back to 10, but still I am suffering so much pain in arms, legs, ankles, etc. that I can hardly bear it. Pain eats up my day. One morning I was so desperate I took an extra 5 mg so I was up to 14, and that day I felt better and could shop. I went down to 12 for the next two days and I'm hurting. What is wrong with me? Is it still PMR? The doctor hates me to go up above 10, so I haven't mentioned it to him yet, as I'll try to get down to 10 again. Is it better to feel bad and try to bear it or to sneak a higher dose of pred?
Try a plant based diet to relieve inflammation, I'm still on 24
I am sorry, Debbie ---- I feel your pain. One never knows when and where the PMR pain hits.
If you are really hurting a lot, I would think a 5 mg increase would be of help. I am on 25 mg right now.....still hurting, but tapering down to 20 mg tomorrow for at least 2 weeks and also getting Physical Therapy for my pelvic/girdl pain so that I can get out of bed in the morninI Could not ----it was difficult! I used to be able to jump out of bed.
Eileen or Mrs. O will be kind enough to advise you. I am new to this forum and still learning and making mistakes by tapering too fast and not pacing myself to do less, and resting more. Stress can also cause a flare.
All the best to you.
Erika
10mg is not a high dose, so I am not sure wh your doc draws the line there. I started with 30mg, reducing it eack week until I reached 15mg, which I stayed on for months.Now I am on 13mg, reducing by 1 mg per week. My sense is that as I reduce the dose, the pain is starting to come back. It had not disappeared completely even on 15mg. My guess is tht the pain will come back and then I will be put back on 15mg. Tell your doc you want to try a maintenance dose of 15mg for a week, to see whether that helps.
I started at 30 mg also, I am down to 25, but should be careful not to go to 20 right away. According to a German guideline, I should reduce by 2 1/2 weekly until I reach 15. I will then follow the Bristol guidelines which call for 15 mg for 6 weeks etc., 12 1/2 for 6 weeks and 10 mg for one year.
If you allowed a flare to happen because you went too far down on the dose then you probably need a week or two at the dose you were OK at plus 5mg to get on top of the inflammation again before reducing slowly back to where you were pre-flare. This is what a lot of doctors recommend, not just my idea.
Yes, it probably IS still PMR. The pred does nothing to the underlying autoimmune disorder which causes the symptoms we call PMR - there is nothing that will cure that - but the pred reduces the inflammation and so reduces the symptoms allowing you a reasonable quality of life. The PMR symptoms will continue as long as the autoimmune disorder is active - usually at least a couple of years, often longer.
Think of it like a bucket with an overflow hole near the top and a tap dripping into the bucket. As long as the hole is letting out enough water the bucket won't overflow. The hole is like the pred - enough of it and there isn't an overflow of inflammation until it gets stopped.
As 3party says, 10mg isn't a particularly high dose, it is the top end of what is considered as "low" but the lower the better at any stage. That is why they start patients at 15mg not 30mg - which is a high dose by the way - to reduce the long term pred risks. But going too low just allows the inflammation to resurge and you then have to get it under control again.
It isn't any point being on a dose that doesn't control the problem - then you have the disadvantages without any benefits. But I hope your doctor would agree you need to have 14 or 15mg for a week and go back to 10mg.
15mg is felt by many experts to be adequate to deal with PMR inthe majority of patients - and the top end dose. Occasionally 20mg may be needed if symptoms are severe or the patient is heavier. However, on eo the problems with starting patients on 30mg is that other inflammatory arthritises will improve at these higher doses. PMR is really somewhat different in responding dramatically, if not totally, to 15 to 20mg within a very short time with the symptoms returning just as quickly if the pred is stopped after a week. If that doesn't happen then consideration should be given to an alternative diagnosis and treatment.
Debbie, after 9 months on Pred, you are, unfortunately, still in the time range of up to 12-18 monthswhen flares in the illness can be quite common.
I wonder whether you remained on your starting dose and each reduced dose for a sufficient length of time to keep that inflammation under control, and have you helped by giving yourself plenty of TLC and rest along the way? Certainly your mention of feeling immediately better when taking a 14mg dose so immediately going off shopping doesn't sound as though you treated yourself gently whilst allowing the increased dose to take effect. Also reducing back down to 12 after just two days will not have given the 14mg chance to control the inflammation. You are getting yourself into a yo-yo situation with the Pred, and that can often result in continuing problems in continuing with future reductions.
You need whatever dose is necessary to get that inflammation under control and you need to increase by about 5mg above the dose where you last felt comfortable, so, if it was me, I would increase back to 15mg, remain there for a couple of weeks and then start reductions again, but in much smaller amounts and over a longer period. It's no good feeling "bad and trying to bear it" - you will be experiencing side effects with none of the benefits.
Eileen, I was in such pain, I could not get out of bed, which has never happened before---- and this is as of just recent --- worse in the last 2 weeks. This is why my GP put me on a burst of 30 mg. He gave me a cortisone shot which did not help. I started Physical Therapy last Friday and the therapist gave me a couple of exercises to do in bed, so that I am able to get out.....with pain. The hip/girdle area is easing up after moving a bit. I will have another session today with the Physio for ultra sound, massage and heat .....Hopefully, this will help. This is the worst PMR symptoms I have ever experienced. It is very cold here.....might it have anything to do with the weather? Your thoughts, please. Thank you.
Erika
It sounds as if it could be a sacroiliac problem - I've had that but it was seperate from the PMR. And hurt a whole load more! I couldn't move at all - it was so bad I had to take a big dose of ibuprofen to be able to get to the car for my husband to get me to the hospital. I was admitted straight away...
Eileen, thanks for your quick response. I will call my GP and mention the symptoms. I have not heard of Sacroiliac....
I took a 200 mg Advil yesterday, and it helped me move/walk better. Obviously this might be seperate from the PMR.
It is early and I cannot call the doctor. Would you please telll me briefly how they could help you?
Eileen, I am glad you pointed out the possibility of Sacroiliac Joint Pain as you had this terrible pain as well. I could hardly put my right leg in front of the left one upon difficult rising this morning. This has been unusual and like I said, I had never felt before. It has eased up a bit this morning, but the pain is still there.
I will discuss it with my GP and hopefully therapy can be of help.
Danke fuer die Hilfe!
Erika
It depends exactly what is wrong. It could be inflammation of the sacroiliac joint or it could be the muscles around it that have gone into spasm. The usual suggestion to try first is warmth over the area that hurts and anti-inflammatories - and that is where the problem lies for us, NSAIDs and pred don't go together. The sacroiliac joints are are two joints in the pelvis on either side of your spine, about where the dimples are at the top of the buttock - does that make sense? Just google sacroiliac joint pain and you'll find loads of info and pictures.
Mine hit at about 4am, I got up to go to the bathroom, went back to bed, lay down and realised there was no way I could turn onto my side! I was stuck because of the pain. Luckily I had painkillers next to the bed which I took when my husband got up to make tea and by the time he was ready to go out to the hospital to have blood taken I could shuffle to the lift and get to the car. I felt an absolute idiot at the hospital but they were lovely - straight onto a trolley, not sent back to the waiting area to sit and wait. Their initial approach was fairly agressive with infusions but the pain was gone very quickly. Unfortunately I had a bad reaction to one of the drugs so they had to fall back on the second choice therapy which was a lot slower but I was already fairly pain free and could move again in the meantime. It took a while but it has all gone now - and once it was sorted out I have been able to reduce the pred for the PMR quite a long way.
Eileen, thank you for taking the time to tell me your experience. The symptom is so severe that it has to be something other than PMR. I woke up at night around 2 a.m. and took 22 1/2 mg of Prednisone which should have lessened the pain by 6 a.m. in the morning when I tried to get up. It was still VERY painful trying to get out of bed and put one foot in front of the other.
I have a TP appointment this morning, but I could not get an appointment with my GP today. He is out of the country.....so l was told....he needed a brake. He has a substitute lady doctor I can consult tomorrow at noon.
All these health problem changes.....as I am aging. NO FUN! I live alone....close to my son's family, but they are very busy and young, and don't have the time to listen to " poor Mom". I am glad I have this website to find guidance.
With thanks,
Erika
Hi Debbie. I know what you are going through as 2 weeks ago my doctor asked me to drop from 21mg to 10mg in two weeks so that he could carry out allergy tests for a rash that suddenly appeared. The consequences of such a sharp drop have been devastating with leg, neck, arm and back pain returning to such an extent that I just could not get out of bed until my remaining 10mg a day had kicked in some 3 to 4 hours later, even then I was in pain.
Having seen my doctor this afternoon he confirmed (and accepted) that I did indeed have PMR as he had misread my previous results and also confirmed that the rash was Hives so he has left me to deal with my preds accordingly so that hopefully I can reach a happy medium of no rash and very little pain. As from tomorrow I will up my medication to 15mg (and higher if required but hopefully not) for the next month. As most have suggested if you need to up your dosage for a more comfortable life you must do it and be prepared to let your doctor know that you are the one in pain and wish to be in control of it. Good luck and be strong. Dave
Eileen - thank you - thank you! You diagnosed my problem correctly. I saw my Physical Therapist this morning and showed her the print out about Scroiliac Joint Pain. She asked me a few questions and pushed on my pelvic area in certain spots. She said that the scroiliac joint was slightly displaced. She showed me to do certain movements --- but never more than 10 times because of my PMR problem with repetitions. She was knowledgeable of PMR which pleased me.
She did ultra sound and applied heat. I could move better after the session. She said it would take about a month to get better with 2 visits a week.
I canceled my appointment with the doctor tomorrow as there is no need for her consultation. YOU diagnosed the problem correctly and the Therapist is now taking over. My thanks to you!! Erika
Erika
I wouldn't say I diagnosed it - I have had it myself so recognised the description! I think it happens fairly often alongside PMR, one cause of it does, that was confirmed to me by an orthopaedic specialist who does research in it. Very high doses of pred will improve the pain too, it is due to cytokines and inflammation like PMR, just more concentrated. But there are other ways of dealing with it that don't require pred in such large quantities. I suspect too that there are a lot of people with something similar to you who are blaming the PMR alone. It isn't, it is an add-on to use modern parlance - and needs to be considered alongside the PMR but seperately.
Thank you Eileen, NO FUN to have an add on to PMR because I noticed that the pain is not entirely in the right pelvic joint area, also in the pelvic/girdle area. I had a similar problem but not quite as painful in my left hip about 6 weeks ago which cleared up with prednisone. So it is related.
The therapist helped a great deal and I was glad that she recognized the problem. I need to do three exercises to strengthen the muscles. She said it would take a month with 2 weekly sessions to give my walking improvement. I am on 22 1/2 mg prednisone which helps some which I take around 2 a.m. so that I can have breakfast with ALL the calcium and magnesium etc. :-)
There is a German website "Innere Medizin, Rheumatologie und Klinische Immunologie" which says to start initially with 25 mg, then reduce 2 1/2 weekly until one reaches 10 mg....and then further 1 mg reduction a month.
I think I would like to follow the slower reduction of the Bristol guidelines.
Would you say so, too?
Again thank you so much for caring and being able to relate, explain and give guidance.
Erika
Hmmm - seems a bit fast to me - wonder if it works. I haven't found a forum like this in Germany, I suppose I should take a look.
How much calcium do you take Erika? It is recommended not to take more than about 500mg calcium at one time because the body tends to limit the amount it absorbs at one time. I take one calcium tablet with one meal and the second with another.
I do the same....200 mg Calcium with 100 mg magnesium with each meal. I am supposed to take 1000 mg Calcium because of the borderline osteopenia.
If you think the German tapering is too fast, I will lower 10 % for a month until I reach 15 mg. From 20 to 15, I always felt I had problem when I reached 15....it is best to go slow from 20 to 15.
Thank you for your input. My hip is actually much better today after the manipulation by the therapist for the scroiliac joint.