PMR, Tapering the Prednisone

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!

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?

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

 

If you take a high enough oral dose it will work too - but the injection provides a high level locally and has far fewer side effects than 30mg of pred. It is one thing doing a fast taper as he has suggested if it is just to deal with an acute problem - but you have PMR and are already taking pred, a high oral dose is adding to the side-effect risk. 

I know, but the injection he gave on my left side did not work, and I had to come back and see him.  He then prescribed the higher dose of prednisone and a handicap parking sign for my car because I could not walk.  Yesterday, I was hesitant that he would inject again and it might not work.  I am not able to walk but luckily I have the sign which will help.  I will have to start over again with 30 mg for three days and then taper.

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.

Thank you so much for this information..  I was finally diagnosed after 7 months of testing and put on an initial dose of 40ml and after 5 months have reduced to 20 by 5 ml at time. The last reduction was 5 days ago and have been in pain ever since so am going to up the dose by 5 ml because I am a mess again and not able to function properly.. I tried but I guess this is just going to take longer than we anticipated..  no easy way out.. just would so love to get off all the meds.. your input here and knowledge is a source of comfort ..  to know that others understand this whole ugly situation is reassuring..  Thanks again for your help...

Oops so sorry I typed in ml but meant mg.

PMR typically lasts from 2 to 6 years for 75% of patients - and for some of us it lasts even longer. And no - no easy ways out, everyone is different except everyone wants to get off pred asap. 

If you have PMR then 40mg was a very high dose to start, 20mg is more usual, so I suspect your return of pain at 20mg is less the PMR itself but possibly steroid withdrawal pain at trying to reduce in such a large step at one go. It is recommended by top steroid experts that in tapering each step should be be no more than 10% of the current dose - so 2.5mg usually will work down to 15mg but some people are very sensitive to the change in dose and 2mg or even 1mg is far better and, in the long run, faster because you don't have to go back to a higher dose and try again.

This is a very old thread - so I do hope you are posting on newer ones too as many people leave the forum after so long.

Thanks so much for this Eileen.  Can you recommend other sites that are more current? 

This site holds a lot of information on different threads.

However, try this website and look at the Newsletters and the Our Little Shop

PMRpro writes informative articles in the Newsletter and also co-wrote 'Living with PMR&GCA'

Oops forgot to put link in

http://www.pmr-gca-northeast.org.uk/

The site is current - it is just this thread that is old. This is a link to the homepage of the forum

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

The first 3 three heading are pinned, the rest are the current threads in the order of the most recent post on them. If you click on one it will take you to that latest post and you can then read the rest.

I have to say - the current moderation of this site seems to have gone crackers. Since the links were to the PMRGCAUK NE website they can hardly suggest it is "unsuitable for inclusion in the forums".