hello again...I have had difficulty signing I to the website...and I have really missed all of you! To review...I have had PMR since about last March...starting on 15 mg and have tapered down to 7.5 over time, but the last couple of months have been a roller coaster. I had that terrible rash (?) on my back...took varying doses of prednisone to get rid of it, over the course of a month. The rash is gone. I am on 10 mg of Pred daily. On Oct. 15 I tried to taper to 9. It was a disaster. After 3 days I was feeling badly...and fatigued. 6 days later my Dr. Told me to go back to 10...but it took a week for me to feel better...and actually I now awake every morning in pain, looking for the prednisone! I know you all have warned about tapering too quickly and/or too soon! Now I am afraid to taper at all! How do you know when to try again?
sorry to be so lengthy...appreciate any comments or advice. Thank You!
If you are still in pain - not yet! If you allow a flare to get hold you need to go back to 5mg above where you were for a week to really cut the inflammation. You don;t have to go so slowly to where you had been OK though: 15mg for a week, 12.5mg for a few days and back to 10mg should work OK.
You have tapered far too far and too fast - the Bristol group would have had you on 15 for 6 weeks, 12.5 for 6 weeks and then 10mg for a year - and that is where you would be now, in the middle of 10mg for the year. Until the inflammation is under control trying to reduce the pred just lets it flare and every time it flares the next reduction is harder.
I so agree with you, Eileen. I have been on this route, and I don't want to experience these terribly painful flares again. I am sticking with the Bristol group!!! I am on my 3rd week with 15 mg and holding until week 6. I feel fine....a bit of lower back achyiness in the morning until I take the 15 mg, but then I am good for the day....thanks to your recommendation!
Try this one, devised by patients for patients and let us know how you get om with it, if you do decide to try it.
Reduction Plan A - recommended current thinking is no more than 10% at a time.
This applies for all reductions. Pick a day and then clear the decks for the following 5 days – if at the end of the five days the withdrawal symptoms have not subsided its too soon go back to where you were, wait a couple of weeks and try again.
However once down to 10mg, many people have difficulty in reducing, there can be reasons for this:
withdrawal symptoms
you are not ready to take a drop
3) the drop you are trying to take is more than 10% - The following is a way that can help you achieve the next steps.
Day 1 10mg
Day 2 9mg
Day 3 10mg
Day 4 9mg
Day 5 9mg
Day 6 10mg
Day 7 9mg
Day 8 9mg
Day 9 9mg
Day 10 10mg
Day 11 9mg
Day 12 9mg
Day 13 9mg
Day 14 9mg
Day 15 10mg
Day 16 9mg
Day 17 9mg
Day 18 9mg
Day 19 9mg
Day 20 9mg
Day 21 10mg
Day 22 9mg
Day 23 9mg
Day 24 9mg
Day 25 9mg
Day 26 9mg
Day 27 9mg
Day 28 10mg
Day 29 onwards 9mg
If at anytime the pain increases, wait two or three days, if it is still there then the drop is to soon, go back to 10mg, wait a couple of weeks and try again. If after waiting the two or three days it subsides then it was probably withdrawal symptoms.
Once stable on 9mg wait two or three weeks and then try to take the drop down to 8mg following the same pattern.
Once you have got to 5mg, then the drop is 0.5mg at a time. So you need a pill cutter to split the 1mg tablet in two. Using the same pattern but this time wait at least 1 month before attempting the next drop.
Below 7.5mg is where the adrenal glands start to wake up and work but they can take up to a year to become fully functional. This is why even when off pred you have to carry the Blue Steroid Card with you which contains the date of the last dose.
EileenH has another one as well.
Thanks!! Worth keeping in mind when I will get to this point.....in a year!!
Thank you for taking the trouble to type all that out! I will print it and bring it to my dr. also. It is reassuring to have this kind of support! Thank you!
I will do the same.....print it and show it to my GP. I wished here in the US there would be more knowledge and support.
The National Medical Foundation, located in Arizona run by Joan and Edward Reiter is useful.
Thank you for the info! Much appreciated.
I will try your plan,I am supposed to be Reducing by 1mg every 6 weeks ,Reduced to 9 a week ago and have not been to good.
It doesn't matter what plan you use - if you try to go below the dose that controls the symptoms then the PMR pain and stiffness will return. I know how difficult it is to convince some doctors you cannot reduce any further - but as long as the underlying autoimmune disorder is active you need enough pred or the symptoms return. Taking too low a dose is pointless - you just get the side effects with no benefits. Around 10mg poses problems for many people, for others it is around 7mg. Don't allow your doctor to force you to go too low. If you haven't settled at 9mg and feel as good as you did at 10mg by the time the 6 weeks is up then you should wait a bit longer.
Eileen, I have been on 3 weeks with15 mg. Prednisone......and I woke up this morning with pelvic/girdle pain, mainly to the RIGHT side which is painful when I walk. I did so well until now. The pelvic pain was on the LEFT side before and it went away when my GP put me on 30, then 25 and 20 mg within a 3 week period......down to 15 for the last 3 weeks. Maybe this was too fast. I hate to go back up and start all over again.
Tylenol is helping a bit.....I am not a "happy camper" that this is happening.......but then this is PMR, and I am still learning!
Would you be so kind and give me your advise?
Erika
If you are on 15mg and it really is PMR you have then you shouldn't need to go back to 30mg. If it were the reduction that had caused it it would have happened far sooner than after 3 weeks on pred. 15mg is the proper starting dose for PMR, 30mg is very high.
Having PMR doesn't exclude us from having other problems and PMR is normally on both sides. It sounds as if you may have a lower back problem as well so the best person to ask would be a physiotherapist. If they can't find any problems then you should ask your doctor. Another possibilty might be bursitis - both bursitis and a lower back muscle problem will be aggravated when walking.
Does using a heating pad or hot water bottle over the area that hurts ease the pain? Is there any movement that is particularly painful? Like stair climbing?
I drop 0.5mg every six weeks...my doctor agrees with this, because otherwise I`m in too much pain...I started on 15mg, I`m now down to 5.5mg....first few days a bit tough, but determination gets me past that....it works!
Remember that now that 0.5mg is becoming a large proportion of the total dose and will become larger as you continue the reduction. That is the reason the reduction schemes we talk about were devised. The first one was by a Swedish gentleman called Ragnar whose story is on the PMRGCAUK northeast support group site. He could NOT get below 5mg (I think, may have been 3mg) without pain and worked out a pattern of taking the new dose one day with the old dose for some days inbetween, decreasing the total dose over several days very slowly. Using this pattern he got to zero - and founded Club Zero over on the forumup forum.
Your doctor is to be commended for their attitude - too many insist on the patients doing it their way.
Other doctors in my practice and Rheumatologist were not so understanding...but my lovely lady doctor is! She`s the one that has seen me in the pain mostly. (i`ve had Fibromyalgia 20 years) and then developed Polymyalgia...so she knew I had lots of pain to deal with. Thanks for the info of Club Zero I will look into that.... I did come off once too quickly (how the hospital wanted me to) but pain returned with a vengence, in fact it did n`t really go away! Doctor`s need to recognise this...it`s our pain not theirs!
On one of the other forums there was a post recently from a lady doctor. A lady doctor who used to try to get her PMR patients to come off pred asap - presumably not believing their descriptions of their pain. Now karma has hit - she has PMR. And now asks whether forcing your patient to go from, say, 8mg where they are comfortable to 7mg where they are not, is going to contribute much in the scheme of the total overall dose that is so scaring to any inexperienced or non-thinking doctor.
Obviously your lovely lady doctor also understands the difference between fibromyalgia and polymyalgia - we need to have clones made of her...
Thank you for your response, it is so much appreciated.
I am able to see my GP this morning about the pain in my right lower pelvic area close to the spine. It feels more like a muscle/tendon problem.......exactly what I had 2 months ago on the left side.
My GP gave me a cortisone shot which did not help much. Only after upping the Prednisone 30 mg for 3 days....then 25 for 3 days and then 20 mg for almost 2 weeks and down now to 15 mg, the pain finally went away, without Physical Therapy. He did say that I should consult a Physical Therapist which I did not need to do.
I think I would agree with you that it might be bursitis and I will mention it to my doctor. Putting weight on my right leg and walking is painful.
I know, the typical PMR lower pelvic/girdle burning pain is different, or it might be a combination of both.
I'll see what my GP will recommend.
My thanks to you for your opinion which I trust very much.
If the cortisone shot wasn't quite in the right place it might not be effective - and I think the physical therapist would be good place to try. The combination of both might have effected a better result - it certainly did for me - but it is also possible there are few things going on at the same time which need attention. The cortisone shots I had were all over my back and in conjunction with a technique called needling in the USA (quaddeln in Germany: "Mit ”quaddeln” bezeichnet man eine Technik, bei der ein Betäubungsmittel knapp unter die Haut gespritzt wird. Viele Ärzte wenden diese Behandlung grade bei schmerzhaften Muskelverspannungen im Nacken und Schulterbereich an. Das Lokalanästhetikum wird direkt an und um die Muskelverhärtungen gespritzt. Dabei entstehen kleine rote Quaddeln auf der Haut. Das sieht etwa so aus, als ob die Haut mit Brennnesseln in Berührung gekommen wäre.
Es werden 2 bis 5 ml eines lokalen Betäubungsmittels wie z.B. Meaverin oder Procain verwendet. Manchmal bringt das sofortige Schmerzlinderung. Manchmal muss die Prozedur wiederholt werden.
Nun, wie wirkt diese Therapie? Muskelverspannungen machen Schmerzen. Dadurch verspannt man sich noch mehr, was wiederum noch mehr Schmerzen erzeugt. Diesen Teufelskreis gilt es zu durchbrechen. Durch das Spritzen in der Nähe von Nervenenden werden die Schmerzreize an dieser Stelle blockiert und man verhindert so, dass eine Schmerzspirale entsteht. Man kann das ”Quaddeln” also als eine Art von Lokalanästhesie bezeichnen"
This description mentions using local anaesthetic but it can also be done with "dry" needles, it depends on the therapist. It is exquisitely painful at the time - but the result can be amazing. You can hear me squealing from outside the room (how embarrasing) but I am also shaking with laughter much to the amusement of the pain doctor!
It was used for me after an acute attack of sacroiliacitis after the original intention of treating with an infusion of diazepam as a muscle relaxant resulted in me developing a nasty tachycardia (a known but rare side effect). i know which I'd choose though - quaddeln may hurt but it works and is safe.
Eileen, danke vielmals! I did see my GP, and he wanted to give me a cortisone shot on the right side of my pelvic/girdl area. I hesitated because it did not help much on the left side 8 weeks ago. I had to go back, and he put me on his prescribed regimen of Prednisone which helped. He wanted me to take 15 mg at night and 15 in the morning for 3 days, 25 mg for 3 days, and 20 mg for a week or more depending on the pain. You told me to take the 30mg together in the morning, which did the trick!:-) I was painfree after that. I took Tylenol today, but it did not take away the pain, and I don't dare to take Advil.
I may have to go back for one of these shots you are explaining.
All in all.....I NEVER thought I would have to experience such pain! It is tough having to deal with it at any age, I would think. PMR is simply miserable.
Thank you so much for caring and relating.....because you have been there.
Erika