PMR

Bones, joints and muscles
1

I have been using the forum for a while and have had a very bad set back since Easter bank holiday

i have been going to my gp regular as I am unable to work ar present due to PMR 

I have been to see a rheumatologist specialist today I went privately as theNhs couldn't give me an appointment till July 12th and as I am in so much pain I paid to go privately

it was very interesting as after a talk and an examination he has diagnosed for sure that I have definitely got PMR (my gp wasn't to sure) hence specialist and also he also said that there is something else that is wrong but he would have to take various blood tests and X-rays to see what's going on and he also wants to give me a steroid injection to each shoulder to ease the pain and stiffness, we have arranged to meet up again via Nhs within the next fortnight

im not to happy about the injections but i will try anything to stop this pain  

2

Hi Marilyn2501,It seems some GP's are not really on the ball with this condition.What has he/she done so far?

Are you on pred? Has your GP organised blood tests to try to determine whether or not you have PMR?

I don't think you should have had to go for a private diagnosis.

As I understand it, if you have PMR and you are prescribed about 20mgs of Pred daily you should have some relief quite quickly and a further blood test would then help confirm it, and if you don't improve then it's probably not PMR.

I hope you don't have to wait too much longer before something positive is done to help you.  

3

Local steroid injections done by a competent person can give very speedy relief - although for a short while it can be very painful as they are given with a local anaesthetic and it hurts a bit when that wears off. I have had several such shots and I would never turn the offer of one down! The first was for an injured knee, actually into the joint and it did hurt a bit after for a few hours but the result was brilliant. The others have been for bursitis in my hips - and they were even better.

If they work well you will realise how much pain you have been in. Good luck and let us know how you get on.

4

sorry to hear thatnjections for a while they do not stay in the body like the tablets and they did help for a while. but my body got used to them. i now take L D N low dose naltrexone. it boosts your boby s ability to cope with pain and boosts immune system. i started on 1 mil of liquid now on 4 to 6 mils in two doses daily. go to the LDN site they will give you all details. if you want to try.very little known side effects.get details there if you want to try give em to your specialist  see what he thinks and ask if he will moniter you in its use.and you will need private prescription and it can be bought from good chemist in scotland.i am coping well on it. tried all sorts. before. so i understand what you are going through. have you been tested for the gene HLA B27. i have it and it does seem different from most poly sufferers..

5

sorry didnt check before posting i tried injections. i meant to say. and  LDN boosts your body s immune system lol.

 

6

My gp diagnosed PMR in feb 14 and put me on 10mg pred all went well for a while and Easter I had a viral infection and that bought on a PMR attack and wasn't getting any relief atall which made my gp think that perhaps it wasn't PMR so he recommended me to a specialist and he confirmed today that i do have PMR

7

I have had these injections in the past for tennis elbow in both arms and yes I agree they hurt like hell but after the initial pain of having it done the results are good but that depends on who is administrating the injection but the consultant I saw today has assured me that after the X-rays he will give me the shots himself - oh to have a bit of relief - bring it on 

8

10mg pred isn't really high enough to get a results - 15 is the recommended level, 20 for difficult cases. If you use too low a dose you won't get a good result, it may feel not too bad but the stock of inflammation is probabbly bubbling away beneath the surface. Then if you were also ill you would definitely have needed a higher dose - whatever dose you are on, if you then get another illness on top, especially an  infection you may well need a bit more short term.

GPs can diagnose and manage PMR - but they need the right info to start with. Never mind, you're there now :-)

9

The first I had was in the afternoon before going out in the evening for dinner - I walked home after the appointment on cloud 9! Then the pain started during dinner :-(  But a couple of ibuprofen worked wonders... :-)

10

The specialist I saw today could see I was in a lot of pain and didn't give me anything and just advised me to stick with the pred 10mg for June the 9mg for July etc etcetera but I shall enquire if and when I have too but thankyou all the same - good luck and keep healthy xx

11

I was on 20mg two weeks ago but it didn't seem to do anything so I went down to 10mg and told my gp and he said to let the specialist decide and when I told the specialist he didn't say to up the pred in fact to keep it at 10 for June then 9for  July etc etc 

12

http://www.rcpe.ac.uk/sites/default/files/quick.pdf

(this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

And you can also read the BSR Guidelines on Treatment and Diagnosis by googling the BSR website.

13

It's such a pity that your GP started you off on too low a dose to get proper control of the inflammation in the first place.  An infection coming along then exacerbated the problem.  Although we shouldn't have to pay for private consultations, we've come across some PMR sufferers who have done so and said it was the best thing they ever did.  I hope your NHS appointment now comes through quickly so that you can at least get the injections done to help with your pain.

14

Hi MrsO, I undrestand you know something about anti inflamatory foods.I'd be interested to know more. 

15

I would love to hear about anti-inflammatory foods.  I have heard tumeric, ginger, pinneapple, cherries????

16

It seems going private is becoming a necessity for even urgent referrals, what a state our NHS is in, I too had to go private as a sight saving urgency, I hope it was in time.

i hope they will now get to the bottom of what is going on with you, like you I'd rather not have to have steroids but the damage that our bodies can cause if allowed to continue unchecked is probably worse?

17

Some people with MS get private prescriptions for LDN, NHS won't prescribe as no trials done. If auto immune diseases are due to an over active immune response, do we really want to BOOST our immune system? I have MS and likely GCA (biopsy tomorrow) for MS I do a weekly jab of Avonex to dampen the immune system down so really not sure bout boosting it.

18

I was on 40 mg but now on 5 mg pred. This is because somebody advised fresh turmeric root. I was taking turmeric powder. It did not help much. Fresh turmeric is a blessing u se results in half an hour 

19

Blodwyn and Adcan, as GPs nor rheumies were able to diagnose my PMR it remained untreated for a year during which I spent several months unable to get out of bed apart from travelling to rheumy appointments by ambulance and wheelchair.  It wasn't until additional symptoms of pain in my head and jaw together with nausea and sickness arrived at the end of that year that both GCA and PMR were finally diagnosed.  Once on steroids, I decided that I would research anti-inflammatory foods as a way of at least trying to get back some sort of control over my life.

I added oily fish several times a week including sardines (with bones - good for our bones), mackerel, salmon and trout.  I also included daily beetroot, avocado, garlic and turmeric - adding the powdered variety of the latter to all suitable meals such as rissotto, pasta and varieties of casserole.  I added lots of known diuretic foods to try and offset the risk of steroid-induced fluid retention, such as asparagus, garlic, fennel and melon.  I ate 'live' yoghurt daily with my muesli before taking the steroids to protect my stomach (I was unable to tolerate the usual stomach protectors prescribed alongside the steroids), and added Manuka honey which has a load of health benefits, including being beneficial to our immune systems which can take a battering from the steroids.

I reduced my intake of refined carbohydrates, including bread (can increase steroid-induced weight gain).  I substituted most white potatoes for sweet potatoes, and avoided parsnips.  These foods turn to sugar in our bodies and could add to the risk of steroid-induced diabetes.  I also completely avoided processed meats, and as much sugar as possible.  Coffee, alcohol and sugar can stress the adrenal glands which are already suppressed by the steroids.

I definitely found that if I veered off this diet for any length of time, I would become aware of worsening pain/stiffness, and when I returned to it, particularly it seemed the oily fish, I would notice a difference.  I only gained a few pounds in weight and in spite of starting on very high dose steroids (40mgs due to GCA), my bone density didn't deteriorate.

If you haven't had a bone density scan (DEXA) then do request one at the start of steroids to get a baseline reading.  Also, ask for a Vitamin D blood test as any deficiency can lead to pain similar to that of PMR.  Such deficiency is easily corrected by a short course of high dose Vitamin D3.

I hope some or all of this helps, and good luck.

 

20

We did a whole load of research into LDN in 2009 here is the situation in the UK.

"The Medicines and Healthcare products Regulatory Agency (MHRA) is responsible for the evaluation of Marketing Authorisation (MA) applications for medicinal products. It is able to grant an MA after supporting data have been submitted to demonstrate that the quality, safety and efficacy of the product are satisfactory for the intended

use. The MHRA is not able to initiate clinical trials.

There is provision in both UK and European legislation for doctors to prescribe a medicinal product specially prepared and for administration to a particular patient to meet a special clinical need. This is the direct personal responsibility of the prescribing doctor. It is possible for a pharmaceutical company to produce LDN formulations to supply pharmacists, at the request of a doctor, for use on a ‘individual patient’ basis. It would be for the individual patient and his or her doctor to discuss and consider whether the use of LDN is appropriate for the patient’s particular clinical need."

The first Low Dose Naltrexone Conference was held in April 2009  at Glasgow University and there are numerous websites concerning the use of LDN.