Help on clarification, please.

[ChinaWuntoo]

Very pleased to have found this site and also read Kate Gilbert’s excellent book in record time.

But I’m confused!

Many people with PMR say that they are ‘struggling’ or finding things difficult. What do you mean? Is it about pain or is it about side effects of medication?

My situation: I have been on Prednisolone since January, now down to 10mg. Also on Colecalciferol, Risedronate and Lansoprazole. Some of this is due to my age, I suspect. GP care has been exceptional and, I believe, knowledgeable.

Within six hours of starting Pred 15mg I was completely free of the excruciating pains and thankfully have had very little pain since. Reduced to 12.5 after two weeks and a month later to 10mg. Rheumatologist says he will keep me on 10mg for a further two months (I suspect GCA and this may be his thinking to avoid eye problems. He seems as if he knows what he is talking about. Of course, with lockdown I’ve only had two consultations by telephone).

Constant headaches, dizziness, tiredness and lack of energy is my problem and now I have an upset stomach (discomfort and diarrhoea) which I think is due to medication (not a bug or diet so far as I know). I get sad sometimes but this is probably due to anxiety over my wife’s health (we think it was the trigger for PMR).

Presumably when people talk of a flare-up or difficulty in reducing steroids this is due to pain returning, rather than side effects of medication? Otherwise, how do you recognise these set-backs, please?

Apologies for asking questions that must seem to have obvious answers to members here but hope you understand that I'm new to this world of PMR

Am I normal?! Am I a fraud or very lucky?

[SheffieldJane]

I think you’ve got a positive attitude. Everything you describe is something that others, including me, complain about. It can get wearing as time goes on. The key seems to be gentle tapering down, light exercise and a low carb diet. The set backs tend to involve the return of your original symptoms that persist and require an increase in dose to control them.

We have to be vigilant about GCA symptoms as PMR and GCA are very closely related diseases. Symptoms include, unusual headache, jaw claudication, sore tongue, double vision, as you probably know already. The risk to eyesight is severe, so please report the headache to your doctor. I am glad that you have a good GP it makes a lot of difference. I hope your wife is doing well, best wishes to her. PMR can last for years, so give yourself time to get to a comfortable dose. Worry and stress does seem to be a precipitating factor in PMR.

[ChinaWuntoo in reply to SheffieldJane]

Thank you for your helpful response.

Certainly I 'struggled' before I was diagnosed but your use of 'wearing' seems more appropriate to my feelings now, thank you.

I have insisted to my GP that I will shout loudly if I show (further?) signs of GCA. My headaches are in the right place and some slight tenderness on left side of head. But no jaw or tongue problems and no sight problems. Yet? The consultant rheumatologist, who described PMR and GCA as 'twins', assured me that 10mg was sufficient to keep my eyes safe - I asked him three times. My GP is aware of my headaches. If I get sight problems I will be straight and fast to A&E with my file, start by telling then that I strongly suspect that I have GCA, and insist on seeing an appropriate consultant. Lockdown doesn't encourage me to make a fuss but just wait!! I have made sure that my hospital / GP file has lots of information written by me.

It might be worth saying: my normal GP was unavailable when I attended surgery in December so I saw a locum. She, I think significantly, was a younger doctor. She picked up immediately that I have a sister with PMR and sent me for a battery of blood tests. It was helpful to have background information from my sister, so I was able to recognise PMR in myself. The next GP I saw also was young, sent me fast-track to rule-out prostate cancer, and then immediately started me on Prednisolone within two days - then after only six hours - what freedom and bliss. This second GP liaised with my normal GP (before she went off to have a baby) and thus my normal GP is aware of PMR (I have no idea whether he knew about it before but would not be surprised if not because he is an older man and may not be up-to-speed with current information).

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

This might give you a bit more information about what you might or might not encounter with your illness, but I have to say if you have GCA type symptoms (headaches) then they need to be followed up - the level of Pred you are on is highly unlikely to protect your sight -

healthunlocked.com/pmrgcauk...

[ChinaWuntoo in reply to DorsetLady]

Hi Dorset Lady.

Many thanks. I have printed your paper and will read it later today.

Please see my response to SheffieldJane.

From all that I have read, 10mg is very low for GCA, as you say. I am assuming that the consultant thinks that as I have been on Pred since end of January it may have built-up sufficiently. He certainly seemed certain that I would not get eye problems. I hope he is right. As a preparation for the last consultation he sent me for over twenty blood tests!

Wish I lived in Southend!

[PMRpro Ambassador]

10mg isn't going to make a difference to GCA - staying on it for 2 months is only a few weeks more than anyone would and one group recommends a year at 10mg for PMR. It isn't a race and he is making sure 10mg is still plenty. A rest here often makes the next stage easier and you seem to be lucky in your rheumy.

But really - you are probably pretty normal to lucky. Not a fraud! Once I was on pred I never really had major problems - Medrol was a bit foul but it was mixed up with other things - and I think that one's history also has an effect. You have recently been through something that is far worse than being ill yourself - the spouse being decidely wobbly. I find PMR, whatever it throws up, is a lot less of a bogeyman than what we have been through over the years with OH. PMR doesn't kill, it can be a pain in every sense, but it will very likely disappear at some point. After 15 years I have given up on that but I don't compromise on dose and as long as I'm on enough pred I'm pretty much good to go. Certainly no pain - not having that!

PMR really is the least of my problems, especially since I have no identfiable problems with pred. I don't take anything other than pred and vit D for PMR - enough other stuff for atrial fibrillation which is also part of my PMR - but I would consider trying less lansoprazole, maybe even stopping it if the D&V continues, and seeing if that helps. I don't take risendronate or the like either - didn't need it at the start and bone density was no different after 7 years on pred.

The more medication you are on the greater the possibility it will clash somewhere and for some people that is also a mental hurdle. It is, to some extent, like lockdown: it is what it is. There are people who don't have a problem with their own company - like me - and there are those who are devastated at having to change a routine or not be able to go and wander around the shops or have the grandkids round. I never had that - I was working and a 4 hour drive from my grandchildren. Infrequent visits were the norm and we didn't have the same access to digital technology 20 years ago. I "see" them more now. At present I'm short of time to do all the things I should be doing (and no, that does NOT include spring cleaning or even housework) And for some people having a chronic illness where you can't say you need a 3 month recovery and then you will be back to normal is the same. This is a new normal that may last for years - and by then you will be older and that normal will be different anyway. It is scary for some people and they become preoccupied with every slight pain or different manifestation. We say "be aware" - that doesn't mean worry about everything. But people still do ...

[ChinaWuntoo]

In reflecting on members' responses....thanks to all... I'm wondering whether my rheumatology consultant had something else influencing him when he stated that 10mg of prednisolone prescribed for PMR would stop development of eye problems if I also have GCA.

I note in the new guidelines for diagnosis that “imaging tests for GCA suffer significant loss of sensitivity after commencing high-dose glucocorticoids". Is he thinking that my low dose would have the same effect and is he right?

Any ideas, please?

Obviously if I develop eye problems I would insist on commencing a high dose (I am on 10mg now with a cumulative 1.19gm) but it seems to me that if it is possible to rule out or to confirm GCA before that happens it is desirable, to say the least.I have an appointment to see him in early September.

I have given a written update to my GP in which I point out that I have found nowhere where it is suggested that GCA should be treated with a dose of 10mg.

[PMRpro Ambassador in reply to ChinaWuntoo]

It is said that a dose of 10mg is enough to interfere with PET-CT imaging but that isn't used for cranial GCA as the glucose uptake in the brain swamps everything else. Studies have shown that there are still signs of GCA after even a few weeks of GCA-level doses - whereas others show poor results after only a short time. If the inflammation is enough to cause symptoms you would imagine it could be seen - but the guidance is that high dose pred for suspected GCA should not be withheld while waiting for imaging as it is impossible to tell when the damage that can lead to visual loss will occur. There has been one person on the forum who was seen at the ED and there was talk of him receiving an infusion of high dose pred - then they changed their mind and gave him oral pred but he waited a bit to take it. He woke with loss of vision in one eye and was lucky the other eye was OK - once one eye is gone it is 50/50 whether the other will go in the following couple of weeks.

[ChinaWuntoo in reply to PMRpro]

Thank you, that's very helpful.

You said " it is impossible to tell when the damage that can lead to visual loss will occur" which is worrying but also alerts me, as does your comment "once one eye is gone it is 50/50 whether the other will go in the following couple of weeks". Time leading up to eye problems is critical it seems. That's my problem!

I am reading through the recent GCA guidelines and may contact my GP next week. I had 21 blood tests a couple of weeks ago so he will have those results to help make a tentative diagnosis.

[PMRpro Ambassador in reply to ChinaWuntoo]

Up to 1 in 5 patients with GCA have normal ESR and CRP - so don't rely on them. Once you get any sign of visual symptoms then it is generally said there is about a week before it becomes critical - but at the same time you could still have a clot that blocks the blood supply. Any transient loss of vision MUST be reported to (preferably) the ED since it can be a symptom of stroke as well as GCA. Though of course, visual loss in GCA is effectively a stroke.

[ChinaWuntoo in reply to PMRpro]

Again, thanks.

Since your previous post I have composed a letter to my GP stating all the 'signs' that I have which I think could be symptoms of GCA. I was rather surprised myself at the list, so I hope he will treat this as an emergency. I already have given him a link to the recent guidelines.

Be very sure that if I develop sight problems I will go to A&E immediately.