I am now on 2.5mg tablet every 5th day. Do you think I can stop pred now or should I spend a couple of weeks having one every 6th day then every 7th day???
I am having a bit of upper arm stiffness recently but that's all. My ESR was 8 a few weeks ago which is the lowest it has ever been Strangely I spent a few weeks with absolutely no aches or pains at all - my joints felt strangely loose. I expect ESR would be in teens if I had it done today.
Beev
Beev
That's a difficult one because I haven't come across anyone stopping steroids at 2.5 before. I think if it was me I would go for your second option especially as you say you are having some upper arm stiffness. I am now on .5 and zero on alternate days with the plan that after a couple of weeks I will do 2 zero days followed by a .5 day, then 3 zero days then a .5 day and so on.
Good luck with whatever option you take.
Shirley(MrsO)
The only answer has to be - try it and see what happens a couple of days later. After all, if the stiffness does get worse taking it 2 days later would just be the same as going to 1 in 7 days wouldn't it.
Eileen
Its difficult for you beev not being able to take non coated tablets isnt it
As the effect of the tablets only last 36 hours is it at most you must spend a lot of time with no steroids at all If you have upper arm pain it means its still lurking around so I personally wouldnt rush it as the last thing you want to do is go backwards !
Beev
Ask for a Vit D test, if it is OK, then try a drop.
Vit D if low causes aches and pains just like PMR - read about it in the Newsletters posted on North East website (see sticky) Nov 2010 and Nov 2011 (latest will be on website next week).
Good Luck
Thanks all
I am actually getting a bit of pelvic area muscle stiffness now too. Do you think I should increase a bit or wait and see?? Not sure whether to nip a potential problem in the bud or to wait! So now I'm definitely not thinking of stopping!!
Another question, probably for Eileen. I am wondering if I have a more extensive auto-immune problem going on. Just over 2 years ago, I had no health problems. Now I have acid reflux, pmr, bronchiectasis and cystitis type symptoms which won't go away. Does this fit anything???
Also, is it possible to have some bacteria in the bladder without it showing in lab urine culture?? I have read about somewhere in USA where they do broth based culture insread of agar agar and they culture it for longer and this enables them to find stuff that traditional labs dont find. My lung specialist seemed to suggest that labs dont always find the bacteria.
Also, have any of you had an auto-immune profile done in your blood tests when you started PMR?? Lung specialist said it was probably done at the same time as the Rheumatoid factor but I dont remember it.
Beev
Sounds more like needing to up the frequency of your single pill!!!
Yet again I'll say it (don't know where I've said it so far now :oops: ): when I started on the new batch of pills I started to feel a bit achey after a few days but ignored it thinking it was just the weather until it really hit hard overnight. Now I'm struggling to get back to where I was before (new pills tomorrow so fingers crossed :roll: )
Better up a tiny bit than risk a big bit :wink:
As for the bigger picture - possibly! But there are so many and such undifferentiated autoimmune syndromes that you could wait years for an idea to occur to someone. The bladder problems could be fungal in origin (i.e. thrush) but I had some cystitis type problems that were due to a very short and narrow urethra (exit from the bladder) and they were solved for several years by having it stretched :oops: . Had it done successfully twice. There is also a thing called irritable bladder and if it improves with higher steroid doses that could be an answer - and there are other drugs to help it.
The cultures done in the lab are for the most common bugs - I think they can ask for more extensive testing if they want to, don't know for sure though. Don't know what you mean by autoimmune profile - had some typing done but everything was negative as far as I know. Probably so expensive it's discouraged :roll:
Eileen
Thanks Eileen
Also - can anyone think of a reason for my sudden strange bout of joint/muscle suppleness (lasting several weeks) where ALL stiffness disappeared- not just PMR - also rotator cuff shoulder stiffness - and my joints felt kind of hyper mobile. It was a weird feeling of looseness in my hips/top of legs when I walked. At the time, I thought it must be some kind of hormonal surge. ????
It's stopped now. I have shoulder issue back and the stiffness I've described above.
That urethra stretching thing doesn't sound like much fun. Were your bladder issues during your PMR, Eileen - or before?
Beev
beev
try this old fashioned remedy for the cystitis/thrush
Teaspoonful bicarbonate of soda, with as little water as possible.
take three times, three hours apart and wait.
Acid reflux (Mrs O's remedy and it works)
Squeeze a fresh lemon (stick it in microwave for 30 seconds more jiuce) divide into three and take with water three times a day. It works.
The acid in the lemon juice turns into alkali and hey presto acid reflux gone.
There is a thread on this somewhere.
Let us know how you get on.
PS Ask to see a physio who knows about pmr for shoulder pain.
beev - did any of that relief coincide with your antibiotics? We have a colleague in Budapest whose wife had something akin to PMR but required massive doses of steroids to control it and developed Cushings syndrome big time. Eventually he and the rheumys agreed on a plan to treat her with antibiotics over an extended period - and whatever it was went into remission. They had no cultures that suggested any bacterial infection so don't know if it was a subclinical infection or something to do with side-effects of the antibiotics. But I have heard other people talk about feeling better after antibiotics.
Is it proven rotator cuff damage? It is very like bursitis which is a known part of PMR.
My bladder problems being sorted were just after having baby no 2 and about 9 or 10 years ago. The first time was in Germany and no offer of pain relief was made (fairly normal :lol: ) and the second time in Durham where I refused a general anaesthetic - seemed a bit OTT having had nothing the first time! The nurses were more upset than me. It really wasn't any more painful than during/after peeing with a really bad UTI :lol:
Eileen
Eileen, Mrs K
No, it was before the antibiotics that my joints started feeling abnormally mobile. My original shoulder problem was just 1 side and PMR would have been bilateral, wouldn't it? What were your urethral symptoms Eileen? Do you think they don't always find bacteria etc when samples are sent to lab even if there are some there?? My lung specialist seemed to suggest that was the case.
My lung specialist said I would probably have to stay on the Omeprazole but i could try a lower dose. The positioning of my bronchiectasis suggests that i MIGHT have got it from acid aspiration as it's at the bottom on the right. My gastroscopy suggests i am not having reflux while on the Omep and she says I would have mucus symptoms etc if I were still doing it. The thing I don't understand about that is how i have been aspirating?? Most people with reflux don't aspirate.
I still have urethral discomfort and am getting really depressed about it and about not being able to drink tea, coffe or wine!! I'm also off wheat for 2 weeks just to see. It's my 60th birthday in a couple of weeks and I really want to be well for it and not feel my body is falling apart!
Beev :cry:
Know what you mean beev - I'm not 60 yet and I'm not amused either :roll: :wink:
They did a bladder scope in Germany and asked how many UTIs I thought I'd had in the past - I felt I'd had quite a few but not as many as they did! If I remember rightly, they reckoned it was a case that the bladder never quite emptied because of this very narrow urethra. What I would say is that I felt I had a lot of yeast-type infections and a 6 week course of Nystatin certainly improved things a lot. I would do that every so often (with my GPs approval after a long discussion) and it seemed to help long term. Can't do it now - they stopped making the drug :cry:
But I would ask to see someone with a urology background - the guy I saw was a colleague of my husband's and he was very helpful when I told him my history. I'd had a UTI that ascended to the kidneys (because a cocky young GP fancied himself so much he thought I was going to to see him cos I fancied him :shock: Pratt!!). The senior partner got it right in one - flank pain and feeling ill is NOT dealt with by muscle relaxants :roll: .
Eileen
Beev
Ihave hesitated to say this, but the clinic that sorted my friend out after years of trouble, was the STD clinic, which was known as Ward 34 in Newcastle. What they did not know about it all was beyond belief and within six weeks no more problems with UTI's and she was Type 1 Diabetic and the Prof in the Diabetic Clinic talked her into going to Ward 34.
Just a thought.
Never thought of that MrsK - it's true, they know more about what can cause \"down there\" to feel \"not right\" than anyone!
And beev - there are a load of things that could cause such problems and they do need ruling out. Properly - not with trying out a series of antibiotics that doesn't achieve anything. Imaging of some sort seems called for as well as more specialist knowledge.
good luck on the search :wink:
Eileen