Recently diagnosed with PMR in need of advice.

Hi Everyone,

Sorry this reply is so late but I have had problems with my broad band connection.

Thank you again for your replies and advice. I am feeling much better. :lol: I spoke to my GP and she suggested increasing the Pred a little which has helped I am now taking 15ml one day and 10ml for two days. However I can feel the differance between a one tablet day and a three tablet day. Spoke to my GP again on Friday, for blood test results and she said you could get 1mg tablets and that it might be a good idea to try going to 12ml daily. I asked if I would need stomache protection medication (something I would not have known about if it was for this web site) and she said I should have been having this anyway and has prescribed some. I have made an app to see her in a couple of weeks to discuss long term management. I will definatly take the GMC guidlines and a long list of questions!

Only one recent problem which was quite scary. A few nights ago I took my calcium just before going to bed as I had forgotten to take it earlier in the day. I kept falling asleep then waking up every ten mins with a very dry throat and being unable to swallow without drinking some water. After a few hours I could not stand it and got up to make a hot dring. I looked in the mirror and my neck was really swollen so much so that my chin had disappeared into my neck! My throat felt tight. I had a couple of hot drinks while considering what to do, NHS Direct, out of hours GP or accident and emergancy? However after the drinks the swelling started to subside and after a few hours I was back to normal but with a very sore throat. Throat is still a bit sore now. The only thing I can think of is that some of the calcium tablets had become lodged in my throat. Has anyone else had a similar experience? I now make sure I take the calcium well before bed time and have plenty to eat and drink after taking it.

Well must make this all for now. Hope you are all feeling as well as can be expected and thank you all again for your excellent advice and support.

Regards

Jan101

Hello again Jan

I'm so glad you're feeling much better than the last time you posted having increased back up on the dose.

Jan, the Prednisolone comes in 5mg, 2.5mg and 1mg tablets. Like the 5mg tablet, the 2.5 is also enteric-coated for stomach protection. The drop from 15 to 10 is still very large, albeit that you are doing it on alternate days and, as you are feeling worse on the days that you are taking 10mg, you could try taking 12.5 on those days instead (ie 2 x 5mg plus one 2.5mg). This would be preferable to the larger drop of 15 to 10mgs especially as you have already had problems with a too large reduction.

That must have been quite a scary experience with the neck swelling overnight. I have not come across this experience before. Perhaps, as you have said, the tablet may have been somewhat stuck in your throat especially as the problem seemed to have resolved after having a couple of hot drinks. - do you take sufficient water with the tablet? I don't take calcium tablets but it has previously been recommended on the forum that it is preferable to take some at lunchtime (allowing time between the steroids and the calcium) and the remainder at teatime.

Do let us know how you get on with a slower reduction.

MrsO

Hi all,

What sort of calcium tabs are you all taking? Mine are big tabs that I suck, like sweeties, and I have never had any problems with them sticking in my throat. There are several different varieties (Italy has lemon and aniseed flavours!) and some are more gritty than others so you need to try one or two to find one you like. But I am surprised if calcium tablets cause those sort of problems.

must dash,

EileenH

Hi Eileen,

I am taking the calcichew tablets and I do try to suck or chew them but always feel that I end up swallowing some lumps. I usually try to drink loads of water after taking them but that night I just realised I had not taken any when I was cleaning my teeth so probably didn't drink enough water. I got a sore mouth when I started taking them and tried the disolvable tablets but I got terrible wind and bloating with these so decided a sore mouth was preferable.

I am begining to think I am allergic to calcium suppliments!

Regards

Jan

Hi Mrs O,

I am hoping the 12ml daily will stabalize things. I will talk to my GP about the 2.5ml tablets when I see her and suggest using these for further reductions in the future. I had seen the advice about taking the calcium after lunch and try to do this but meal times are a bit haphazard as I can not guare :lol: ntee that I will get a lunch break when I am at work and routines see to be impossible to keep too. I realize this is not good for anyone with PMR and will be working to address this problem.

Thank you agian for all your help and advice it is good to feel that you can contact someone who understands what is happening due to the PMR and that I am not just going mad or being a hyprocondriact (Really bad spelling but you know what I mean!).

Regards

Jan :lol:

I am so pleased I have found this site. My first PMR/GCA diagnosis was Feb 2008 and I was in hospital for a week having tests because I did not respond very well to 30mg of Pred which my specialist raised to 40mg. The stiffness in my legs took about a month to go and very gradually I reduced the Pred. to 3mg which I was on last Jan. 2 years after the initial attack. Then a GCA flare and up to 10mg which managed to control the symptoms and gradually down to 6mg.

I have been suffering a second bout of PMR for the last 6 weeks which I think was due to reducing too quickly and not taking notice of the pains returning and not raising soon enough. This is easy to see in hindsight but may help some of you. I am now on 15mg of Pred.

I saw my hospital specialist 2 weeks ago and he thinks I will not be able to reduce the Pred. without extra help so he has put me on Methotrexate 10mg once a week followed by Folic Acid tablet 2 days later. I understand this drug is a Pred. sparer allowing reduction to take place without the flareup and eventually be off the Pred. altogether. Tiredness is the only side effect so far but the leg pains are still there and walking is not easy. When I am over 10mg of Pred I become diabetic hence the desire to reduce below that level as soon as I can.

I agree with a lot of you that if the pains are there stay on the Pred. level until you feel well with no PMR symptoms, however long that takes. It takes about a week for the reduction to have any effect and I have learnt that if the pains last for longer than a few days I will be up on the dose again then try to reduce again a few weeks later. That way I hope to prevent a flare in the future..I hope this one will be over soon because the pains in the mornings are awful and I need Paracetamol to do anything. I will keep you posted on the success or otherwise of the Methotrexate treatment.

Mrs BMH

Sorry to see that you now have GCA as well as the PMR.

It might be of some help to you to read the BSR Guidelines on the diagnosis and treatment of GCA (they can be found on the NHS website, BSR Website and also www.pmr-gca-northeast.org.uk - under Useful Information).

Please watch your eyesight and can I suggest you visit an optician, if you have not been referred to an opthamologist, and get a marker level.

When you have GCA, you can have two free eye tests per year, the Optician fills in a special form.

Good Luck

Hi MrsBMH,

Welcome to the club none of us wants to be a member of!

I'm looking forward to hearing your experiences with the methotrexate. I've posted a few weeks ago about it. I have searched and only found one study which looked at the use of MTX in PMR which claimed that it helped - and the peer review was quite mixed. It was a very small study and the apparent benefits (fewer recurrences) happened after the MTX had been discontinued and there is no evidence for the MTX having a lasting effect to account for that. It didn't, in fact, reduce the overall amount of steroid needed by the patients. Other groups have found no benefit.

That's not to say it doesn't help - so please do keep us posted!

I've also had a flare this last few weeks which I suspect was due to the very hot weather we've had here in central Europe but I take my dose on alternate days and have only had to go up from 13.75mg on every second day to 17mg to control it. I'm back down to 16mg/2 days now, so about half what you are on and I do wonder if that is something you might consider later. Once you are on a daily dose of 10mg you can try the alternate day dosing. The concept is that the anti-inflammatory effect of the prednisolone lasts far longer than the drug remains in your body so your body gets a break from the steroid effect - so the adrenal glands are less affected. Have you also been advised to eat a reduced carbohydrate diet whilst on steroids? It is perfectly possible to control mild diabetes without drugs if the diet is strictly controlled - I have diabetic friends who manage very well. This was one of the things I found during extensive reading of stuff from all over the world, including Australia, New Zealand, Canada and the USA as well as mainlnd Europe. It wasn't just on one site and was also on info sites like we have from the NHS in the UK so it's certainly not from \"cranks\" (for lack of a better word!).

It has been a steep learning curve and I remain slightly surprised, even though I shouldn't be, at the lack of information and advice received by PMR patients from their doctors. Whilst I don't expect GPs (or even rheumatologists necessarily) to know masses about PMR I do think they should know more about the use of steroids and how to minimise the side-effects than they apparently do. They seem more interested in getting us off them asap - and hence risking a flare-up. Your comment seems to confirm the suspicion I have that if you go down too quickly it is more difficult to get the dose down the next time. I'm sure you've seen our posts about how steroids don't cure PMR, they just make it liveable with but there are still doctors out there who believe that all patients can get off steroids within a couple of years - especially, it seems, in the USA, but at least we're not there.

The other thing I'd say is that I'd hate to be asked to take a drug which has tiredness as a side-effect! The fatigue with PMR is bad enough without adding to it. :roll: Mind you, if you've taken MrsK's advice and looked at the diagnosis and treatment guidelines from the Rheumatologists Association you'll understand why I ask - is your consultant sure of the PMR label? If you needed that high a dose before and still have such pain in the mornings on 15mg it doesn't conform with the basic guidelines and could well be another form of arthritis/rheumatism.

However, all the best with the reduction and we look forward to hearing from you,

EileenH

Hi Mrs BMH

Yes, like you, we are all glad we have found this site along our journeys with this condition.

Like you, I also have PMR and GCA. The PMR wasn't diagnosed for over a year until GCA arrived in early 2007.

It isn't surprising to hear that you didn't respond very well to a starting dose of 30mgs. I commenced at 40mgs and some people with GCA start even higher at either 60mg or above.

I see that you had a GCA flare two years after the initial attack. In PMR it is quite common to suffer a couple of flares during the first 18 months or so. However, my first flare was after 2.2 years when at 3mgs (a similar experience to you) and I had to increase to 10mgs for 2 weeks, 7.5 for 2 weeks, 7.5 and 5 on alternate days for 2 weeks and then 5mgs where I was advised to stay for 5 months. All these reductions were dependent on my ESR and CRP blood test results returning to normal and staying there. I then started reducing again every 3 months but again when I reached 3mgs all the pain returned......another flare. This time I increased to 5mgs for 3 months and after tapering incredibly slowly between each dose I have now reached 1mg with everything crossed!

It is often very difficult to reduce below 5mgs and I think it was the long periods recommended at that dose that eventually let me reduce successfully to where I am now and I just wonder if this routine may have helped you, too.

Some experts say that some sufferers of GCA have to stay on a small dose of Prednisolone for life and I did once speak to a lady diagnosed with GCA who had been on 5mgs for 15 years which was keeping everything under control and she was feeling very fit and healthy.

I'm so sorry to hear of your persistent pain and I do hope that you will have some relief soon. Do keep in touch and let us know how you get on.

Very best wishes,

MrsO