PMRGCAuk
7,554 members12,538 posts

Any advice please?

Diagnosed PMR August 2015 and started on 15 mg Pred. After approx 8/9 months developed pain in right buttock. Have always been told this is not due to the PMR and encouraged to reduce steroids. Physiotherapy has not helped but physio did help with some muscle weakness I had at that time and that got better.

The last two years it seems has just gone by waiting for appointments (six months wait for Pain clinic). MRI last April ruled out any problem with metal hip joint. Last October pain got worse and spread down back of right thigh and back of lower leg. Cramp like pain feels like muscles are in some sort of spasm. Back Xray showed otheoarthritis lower spine and so now this is thought to be responsible for hip and leg pain. I have always doubted this but GP, physiotherapist and now doctor at Pain clinic all seem to think so. Now waiting for another MRI this time for lower spine as last one was only hips.

I have continued to reduce Pred slowly as instructed recently got down to 6mg and the pain has got worse! It has been so bad today I felt unable to concentrate on anything. The pain is so bad when walking and standing and is relieved when sitting and lying down. Seem to do everything sitting down these days. Paracetamol and Co-codamol are of little or no help. My shoulders hurt today but that might be because I am getting so stressed about it all.

I am so tempted to take more Pred to see if it helps. It would be going against what everybody is telling me.....would that be so bad and could I go straight back down again if it doesn't help.

Any advice would be most welcome.

33 Replies
oldestnewest

I couldn’t possibly advise anyone to go against medical advice from their doctors but yours seem to have conspired in a very odd way. PMR lasts on average 4-5 years, for some people much longer .You know and I know and they should know that more Prednisalone is likely to relieve your pain. We wouldn’t stand by and let a cat or dog suffer like this. The aim with Prednisalone tapering is to get to a place where the inflammation is controlled and we are comfortable. I am currently “ stuck” at 7 mgs, I can’t seem to get lower without feeling really ill, then the pains creep back and the stiffness begins. I was diagnosed in March 2016. My GP seems to understand this completely and trust me. I am keen to get off Pred. She knows that.

In your situation I would be insisting that my GP support me in a short experiment of say 10 mgs of Pred. Just to reassure myself that this was not the answer. If it didn’t help I would return to the 6 mgs and no harm would be done. If it did help, then clearly my PMR is still active and should be treated. The buttock pain is not typical PMR pain but there are associated conditions that PMRPro is familiar with. I am sure it was discussed on here in recent months. The rest sounds like a flare coupled with something else going on with your hip, buttock and back of your legs - like horrendous sciatica or worse. They should be trying Pred at least until the MRI scan.

Some doctors think that PMR only lasts for 2 years and vastly overestimate the long term side effects of PMR doses of Pred. This colours their judgement and prescribing decisions. I wish they would read the latest research!

I am sorry that this response is so long and probably rambling but I feel so sorry for you and angry on your behalf. This is not good enough. Please let us know what happens.

8 likes
Reply

Thankyou so much for your reply Sheffieldjane. None of the doctors I have seen in the past three years seem to understand PMR. When are they going to catch up ??

My bloods are normal and some of what they are saying does make sense but my instinct is to increase the Pred. I don't know why I am finding the decision to do this such a big deal especially when pain clinic doc offered me Amitriptyline and/or Gabapentin both drugs with quite a few side effects as well.

Also I wasn't sure if going straight back down to 6mg would be ok if I get no response to 10.

Thanks again

Reply

"When are they going to catch up "

When they develop it themselves - it does seem to change their tune!!!

1 like
Reply

I think checking if extra pred helps seems to be a sensible idea, especially as the pain first developed when you were reducing pred. However it is possible that the pain you have is from nerves being compressed in your spine. I had really bad hip pain, not as bad as you describe, which went away with my 15 mg pred, and returned as I reduced. A physiotherapist sorted this out for me by doing something called dry needling and a couple of other therapies, as I had very tight muscles in my back. She said that this kind of spasmed muscles can even cause vertebral fractures in vulnerable individuals. So the hip pain was referred pain from my spine. Not saying this is what is causing your pain. But my pain was relieved by pred before I knew what it was, and the right therapy when it returned has meant I've not had any problems for well over two years now. So don't give up hope.

2 likes
Reply

Thankyou for your reply HeronNS. I know I have probably had OS in lower spine for many years. A lot of backache but manageable. I am nearly 73 and hips replaced in 2002 because of OA. I just find it hard to believe that it could suddenly cause the pain I have at present.

Has the Pred been masking it? .........I really don't know .........and if they are right and it is from my back - will a higher dose of Pred just mask it again?

However having said that I am going to try a higher dose with or without GP support.

Thankyou so much.

Reply

Pirifotmis Syndrome is what I was casting around for. Poopadoop kindly supplied the term. See if the symptoms fit and present it to the doctors are a possibility.

Reply

It can be relieved by sitting - but also made worse by sitting - and I bet most doctors don't know that...

Reply

Hi Wenben,

On a difference tack slightly, but has anyone suggested bursitis of the hip?

What you describe sounds very similar to problems I had last year. Not connected to GCA as I’d been in remission a year when it occurred, more likely related to arthritic knee and walking awkwardly.

I had a couple of cortisol injections (GP. ) and some physio and acupuncture - like you it affected my entire right leg.

Just a thought!

Reply

Hi DorsetLady

Do you mind me asking.......was the injection in your spine or leg?

The Pain Clinic have said that if MRI shows it is a back problem they may be able to offer injection(s). She also mentioned an operation which I certainly don't fancy !

I have been looking up Bursitis. Also some very detailed information I found recently with diagrams about Myofascial Pain Syndrome I now can't find.

I did mention Myofascial PS one day to GP. She said...."well we don't diagnose that very often".

Thankyou for your reply

Reply

Hi again,

MFP is very often mentioned on here with regard to PMR.

As I said mine wasn’t related to GCA but to an ongoing problem relating to arthritic knees. The physio diagnosed it when I was seeing him about my knee, I then saw GP about a referral to MSK clinic for my knee and mentioned the hip. He offered a cortisol injection which he did - in hip, and said if it hadn’t improved within a couple of weeks to get another one, as there is a large area to cover - don’t think he was being personal about my bum! It did get another and with that and physio it did get better.

Ironically when I saw surgeon re my knee op, he said he thought it more likely to be arthritis rather bursitis, so who knows!

This is what I found on line -

stephaniejonesmd.com/images...

patient.info/health/hip-pro...

My surgery is happy to give cortisol injections, not sure that all are. I think if you have to attend Pain Clinic everything takes so much longer to resolve!

Hope this helps

Reply

I have been on steroids for 8 years. I had GCA, I also have buttock pain, but according to the professionals it is not related to GCA. I am coming off steroids because the inflammation has gone. When I had relapses in the past I spoke to our helpline and went up to 10mg for a week, down to 7.1/2 for another week and then down to 5mg on which I stayed until I saw my Rheumatologist. All the pain went. I did it again when I had a lot of pain, but went up on my own and was frowned upon because I took it upon myself to go up. Be very careful.

1 like
Reply

Thanks sookiesue

I think I will risk being frowned upon if it means the pain goes away.

Thankyou for taking the time to reply

1 like
Reply

I most certainly would go back up to 10mgs for a couple of weeks at least just to see if gets rid of the pain. If it doesn't then there must be an underlying condition. Good luck.

1 like
Reply

Thankyou

Reply

I do believe I may have had the same thing going on as you do. When I saw my Rheumatologost, he did some tests on me in the office and he concluded it had to do with the sacrelliloac nerves. I was on a low dose of prednisone at the time, but he wanted me to continue to taper down as my numbers were good.

He showed me some stretching exercises to do and believe it or not - the exercises worked. If I feel the pain creeping back in, I do the exercises. They are simple exercises that can be done in a chair! Today, as I sit here, I haven’t had the pain in a few weeks. Before that, I was dibilated. Perhaps you can google the exercises for stretching of the sacroiliac nerves. It really can’t hurt. They are mild exercises. I hope this helps.

1 like
Reply

Thankyou nymimaO1 ....That's really interesting. I have only seen a Rheumatologist once at the very beginning and then I had to pay privately ! I seem to have been left to my own devices ever since. Thank goodness for this site.

I will certainly look this up.....................Thankyou

1 like
Reply

If this is what it is, the stretching will feel so good while you are doing it. You can do this anytime and any place. Some of the exercises are something you can do without drawing attention. Keep us posted. If it doesn’t feel right after a while, please don’t push, but I do hope this will help you.

Reply

I've had hip pain off and on during my 4 years and counting of PMR. Sometimes bilateral and occasionally one hip is worse than the other. With the help of my Bowen therapist and comments from PMRPro about myofascial pain and bursitis I very quickly came to realize that the pain was not PMR. When the pain flares I can relieve it with exercises provided by my therapist and/or others found on the internet for hip and back. If I do the exercises regularly either in the pool or on my bed, I can avoid the pain, but I never seem to have the discipline to do that. I also have compression of the lower spine, which could also be part or all of the cause.

Reply

Hello nuigini

I tried Bowen some time ago before this latest pain got so bad.

Although I only live in a small town there are two therapists within a few miles and I chose the female one. I couldn't relax as I am so uncomfortable lying on my front.

Although I didn't notice any obvious improvement (only three sessions) I am wondering whether to try with the other therapist and see if he can offer the treatment without me having to lie on my front.

I note your comments re exercising. It is difficult to be disciplined especially when you are in pain but it is something I need to do.

Thankyou for taking the time to reply

Reply

Wenben, I don't want to mislead on the benefits of Bowen. It's been amazing for some people. However, I was blessed in finding a therapist trained in multiple disciplines...Bowen, Neurokenetic Therapy, Osteopathic Care and Chronic Pain Management. In her life she was also a personal trainer. So, I can't say I'm benefiting from Bowen alone.

Reply

Can they treat you with a pillow under your knees on your back or is it always front??

Reply

In my case it's pretty much 50/50, first heads down and then heads up. I'm sure a good therapist would accommodate you as much as possible. I believe one of the key requirements is to be able to relax during the treatment.

1 like
Reply

A good therapist should be able to adapt the early sessions if you can't lie on your stomach because of the pain. And the right therapist is important. Mine in the north if England was a witch and amazing, the local one in Italy is a bit woo-ish...

Reply

DearWenbeg, lhope that something can be done soon to relieve the pain you are having.l do not understand that doctors think that pain in you buttock is not PMR,my mother had severe pain in both and that was part of her PMR diagnosis, Steroids cured her of all the pain,maybe you have not been given a high enough dose unless it is related to your spine in which case l hope that there is something they can do to ease the awful pain you are in.l know my mother could hardly sit down the pain was so bad .Sorry l misspelt your name,l wish you all the best .

Reply

Thankyou so much for your reply Grants148.

I have decided to increase my dose tomorrow and see what happens.

This illness certainly is a 'pain in the backside'.

Thankyou for your good wishes and I hope you Mum continues to be pain-free

Reply

I don't know if it was on this thread that I mention piriformis syndrome? That is a real pain in the butt and I found I had weak legs. There are exercises online for that too.

spine-health.com/conditions...

Reply

A lot of information here............thankyou

1 like
Reply

That’s the word I was looking for piriformis syndrome and Wenben’s name. I swear I’m getting worse with my nominal amnesia Pred head. Thanks!

Good luck Wenben. Keep us posted.

1 like
Reply

Hi, I am going on my 5th year with PMR. After about one year I developed another type of pain (relentless) in the right buttocks area (worse after sitting and impossible at night). After much research I was convinced I had Piriformis Syndrome but it took 2.5 years for me to convince my doctor of this and he finally did an injection into the Piriformis muscle and I had instant relief and am still pain free after 3 months. I told the doctor I suffered unnecessarily for all those years. I knew it was not PMR because the Prednisone controls that pain and furthermore this is a different pain. I am sure you have all experienced the type of unusual pain/discomfort that is associated with PMR pain that is much different than pain associated with other ailments (I think that is why it takes so long for doctors to diagnose this and it is so hard to explain to a doctor). I feel that my PMR pain is more like a weakness with terrible achiness and and loss of ability to move limbs normally and of course there is the incredible fatigue. Anyway do some reading on this syndrome on the Internet to determine if these symptoms are the same as yours. Also look at what some of the causes of Piriformis Syndrome are and I certainly saw that I caused this myself by some of what I had been doing prior to the onset of the pain (actually the straw that broke the camel's back was when the Chiropractor twisted and pushed my leg and the next dayI ended up an invalid in bed for a week(. He managed to further damage/inflame this muscle and I was told this by the Acupuncturist that I went to when I recovered. Back problems could cause hip pain also and that is why it is so important to try and isolate each type of pain and not attribute all pains to your PMR. Prednisone keeps other unrelated pain at bay sometimes but when you taper off your other pain will rear its ugly head and (this is also what my Rheumy told me. Research helps a lot. Good luck. Robin

Reply

That was a perfect description of PMR pain Robinre. My arthritic Pain is completely different and to me preferable.

Reply

Thankyou

Reply

Have you any access to a sport physiotherapist or sports/therapeutic massage therapist? If it is muscular you tend to be wasting your time with doctors - they only think in terms of bones...

Reply

I have been seeing a physiotherapist at our local hospital. She has asked me to ring her when I have the results of the MRI. Meanwhile I have exercises to do.

There is a private physio practice not very far away. I will look online and see what they offer. Thanks

Reply

You may also like...