mycophenolate for PMR

i have been reducing 15 14 then 14 13 alt days month on lower dose tweaked it if needed on 12 now and struggling with pain trying to reduce to 11 skin breaking sweats and pain back to 12 help with tramadol.they have said if i cannot get below 10 by march need to look at mycophenolate.i have been on steriods 3 years 

How much trmadol and how long have you been on it for?

Hi had tramadol prescribed for 20 years for a spine problem but at present take them 50mg 4x daily

yes i have tried to taper and it seambed to work untill i hit 11 then my probles dtarted again .broken skin pain and only just got to 11 .i had done 11 12 alternate days for over a month then 11 had to go back to twelve and they have not helped .evertime over last three years 12 has been my problem .today they have given me a injection of steriods for pain and to start on  mycophenolate ,just gets you rally down wish i had never had steroids , but then the GCA could have taken me out .Guess you have to trust and i really have a good GP and Neurologist who has been brill

Hello bri, have you seen Eileen's reply below. Has your consultant mentioned anything about small vessel vaculitis? 

But you say you wish you not never started these steriods. Steriods really are the only starting point re medication for PMR/GCA and really does have the least amount of side effects then the other meds, although I don't deny they are pretty miserable.

also has your consultant said anything about another condition that is also treated with preds resurfacing when the preds are lowered as the lower dose  is insufficient to deal with the other condition.

you really do sound most depressed regarding this mycophenolate issue. You say that you have a good gp so please speak openly with them regarding your fears and reluctance to try this new drug. I am getting the feeling that very little has been explained to you hence your fears and anxiety. This is wrong because all this worry is doing you no good. Read up as much as you can so that when you visit your GP you can better understand what they are stating. Is there not anyone who can go with you as support. Christina 

yes doc and neurologist bril ,spoke to own doc this morning but he has said he doest know much re this med also not specialist in this field. because of shortage of rheumotoligist have had 3 this one left now .so now have asked to be referred to a permanent one, trufully the first one just but me on mxt no real disgusion then left ,pick up by registrar when rushed in hospital due to adverse reaction of mtx ,tried on aza by a locum did not work still made me ill . read on these pages re taper and been on since last march .on 15mg march introduced 11mg dec .problems again bit of a shock when you find you are chewing your tooth .whitch has collapsed .will c how next month goes

Morning bri, I have read the latest reply from Mrs o and couldn't agree more with all her reasoning and suggestions as to why somewhere along the line your treatment hasn't been working for you as well as it should have. Then to read that you have been shoved from pillar to post re consultants who have quite frankly in my opinion given you poor treatment pathways then everything comes to together. I don't believe you were given prednisone long enough and at the right dosags and monitored and helped with the tapering. And because of that your improvement been been sporadic and in panic the additional consultants then prescribed medications that have no real proven track record for improvement either and therefore 3 years down the line you are no better off than you were 3 years ago. I know you say that you get on well with your Dr but for them to reply that they don't know much about the drug and it's not their specialty is unforgivable. If a Dr doesn't know much about a condition then it's their duty to research it so that they do know something about it because if they don't they are failing their patients, ie, YOU! Please tell me you don't live in Britain, because if you do there are complaints procedures that need using. I hope you have a better day. Christina 

Bri, I've just seen that you live in Rotherham, England, I am just shocked by your medical treatment and the total lack of a properly planned out care program. Please when you visit your GP and consultant take a friend along who can give you the support you need when you question why they are pursuing the mycophenolate treatment. You quite clearly do not want this, but maybe there is a grounded reason for this option but until they explain everything to you, you will never understand why, always remain anxious and will not be able to argue your corner should you feel that this course of treatment is not right for you. All the best, christina 

yes thank you i think at beginning things werent quite as they should havebeen but i think they have made up for it when neurologist was involved she has been brill and cannot fault any of her work had every test possible and she has been very supportive as also the rheu nurse hopefully i am going to be transferred to the permanent rheumotologist unfortunately this has a lot to do with the present cut-backs which is affecting a lot more people 

PS - you might find more people on an arthritis forum too. I think it is used in other arthritides/vasculitides.

every time i,ve got down as  far as 11mg i have started with same probs pain in big muscles broken skins etc today i have been given a large dose of steroid in my rump to counter the existing pain short term and also put on mycophenolate from today. MTX put me in hospital and aza also had adverse effects on me. not feeling too great at moment but got to remain positive obviously.

Bri, I'm sorry  I can't help with the Mycophenolate except to tell you that Arthritis Research UK produce a leaflet about it free-of-charge 0300 790 0400.

Steroids cause thinning of the skin, hence the easily broken skin that you are experiencing.  There is an excellent moisturiser available either over-the-counter or on prescription called Double Base.  It is available in small tubes or in a large drum, in either cream or gel form.  It was first recommended to me by a podiatrist some years ago for the dry skin on the soles of my feet.  I tried it on my arms and legs and found that my skin stopped tearing so easily from the steroids.  Many of us PMR-ers now use it.        

do you know if steriods 14 mg is too high .other people have said that they have been on high dose for years i have struggled done ok up to 12 mg but they wanted mebelow 10mg before march i have been on them for 3 years.yet today i have had an injection so must have been high dose,makes me think why could i have not stayed on 12 mg longer. started mycophenolate today.thank you will ring them tomorrow also buy the cream is it just a body cream or face as well .

Bri, I have only used it on my body but it is such a gentle cream that it will probably be alright on the face as well.  I have a number of what the GP has termed Keratoses on my back which have been annoyingly irritating.  GP recommended I rub the Double Base into the area, and it has relieved the itching.

As to whether 14mg of steroids is "too high", we can only say that you need whatever dose relieves your pain and stiffness from PMR at any particular time.  If you started at 15mg three years ago, then with the correct tapering regime you might expect to be somewhat lower than 14mg now.  But there could be several possible reasons for you not being able to reduce further successfully:

1)  You may not have been started on a sufficiently high dose for your initially.  For instance, some people, especially those who are overweight, often need a high starting dose of 20mg.  I do know someone who wasn't finding much success at the 15mg starting dose, was increased to 20mg for several weeks and was then able to reduce comfortably to 15mg but only tapering by 1mg each time.

2)  You may not have stayed on the starting dose for long enough to get complete control over the inflammation before reducing.

3)  You may not have reduced as slowly as your particular body needs.  For instance, perhaps you might have been more successful by taking the slowly slowly approach from the start, reducingf from 15 to 14 on just one day of the first week, two days of the second, three days of the third etc, so tricking the body into not noticing the small reduction in steroid.

4) Did you ensure you had sufficient rest, especially during times of reduction.  If we overdo things, PMR comes back to bite.

Also, have you had your Vitamin D levels tested?  A deficiency can lead to pain in similar areas to that of PMR.

Also diet can help.  There are many known anti-inflammatory foods, including oily fish, beetroot, avocado, garlic.  Avoiding processed meats, etc, can help as they are inflammatory.  Coffee, sugar and alcohol place stress on the adrenal glands, so again things to reduce or avoid.

I do hope the injection will give you some relief.     

thank you started on 20 3 years ago got down to around 11 bad heads GCA up to 60 mg steriods then have tried to come down got to 12 last jan problem up to 15 mg then same at 12 .mtx tried put me in hospitail .aza still ill .so will c how mycophenolate goes .will look at diet i do drink a good amount offf coffee .had a lot stress with family loss .so maybe these have worked against me .did not realise these things could flare it up .but fits the patteren thank you

Any form of stress (illness, accident, family problems, overwork, tiredness) can make PMR or GCA symptoms worse and may be the final straw trigger that leads to them developing. All autoimmune disorders are badly affected by something as simple as being overtired - which is why rest is an important part of management.

 

Bri, yes, as Eileen has said, stress appears to be a major factor in developing PMR/GCA in the first place, and can then aggravate recovery whilst on treatment.  This is why we always advise people to try and avoid stress of any sort, whether physical or emotional, although I know it is impossible to avoid all stress, especially such as you have experienced.  It can  have horrid effects on a normal body, let aloe one that is already struggling to cope with an illness.

Bri, whereabouts are you?  If in the UK, just wondering whether we can point you in the direction of a PMR/GCA support group or even a recommended rheumatologist.

yes in uk ,rotherham area 

Unfortunately there isn't a group in the area surrounding Rotherham at present.  The nearest one is in Manchester which I believe is some 45 miles from you.

So I assume you are under Sheffield hospitals? Would Leeds be too far? A very good PMR person there.

In fact, a very very very good PMR group...

 

bri21

There is an excellent GP ( who is also doing research into PMR) located at

GP at Dykes Hall Medical Centre, Sheffield.   Google Dr Helen Twohig and read.

Hello bri, I don't know how impractical it would be for you re travelling but could you not ask your GP for a referral to Leeds rheumatology. I don't know but does choose and book apply to situations like this, if so and you can get there, grab the opportunity with both hands, you might at last receive a good care plan. Regards, christina 

It is always possible to request a referral to a centre of excellence. I know someone who is going from the SE to be seen at Leeds.

thankyou

hopefull to be transfered to a permanent consultant ASP if fails will contact u back thanks

HI Eleen  ive used this site sevrel times ,about months since you sent me a reply ,i had a change in doc at hospital and was hopefull ,mycophenolate is not working any bending or work sets me coughing vomiting only bringing acid ,but feel unwell. last twice on holidays ,my foot has swollen and could not put on floor ,then went to my knee i have cut myco. down by one and the pain went and swelling in a few days ,a little sign of swelling .Steriods down to 9 from 11 but not stable on this and experiance more pain ,my last apt was cancelled ,they have mentioned 

injectons of some kind or another tab. told these stronger and i dont tolerate the others .reading a lot of reviews steriod reduce dont seam too popual . and 4 years and down to 9 not that bad .Its the GCA that worries me more so cannot stop taking .So you mentioned someone at leeds ,i think its time i got another opinion ,what do u think ,i would appreciate your contact num if you think good ,goy more info from this site then anywhere ,seam to think that the clinic has not got mant with PMR.thank you

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