Hi all
Its Beev here and my various symptoms continue. I now have to a scan and ca125 test so am not feeling happy. I am currently on antibiotics for a UTI.
My question is this - what would cause absolutely all joint stiffness to suddenly disappear?? I don't mean the PMR, but what I would call normal age related stiffness, like getting up from a chair after sitting there for an hour. I have also had a rotator cuff injury for a few months and have tried all sorts to get rid of it. All of a sudden, along with my current symptoms, it has all gone.
Can this be caused by some dreadful illness??? I'm getting so twitchy at the moment!!
Beev
Beev
You are describing an experience that was told me ages ago - so far back I cannot remember who it was - but it turned out it was due to the antibiotics. I do recall that it did not last, but I cannot recall how long it lasted. Age is telling on me.
I wonder if you should talk to your pharmacist, I would just to see if that could be a possibility.
Good Luck and enjoy the freedom for as long as it lasts.
Beev
When I read your post, I was about to suggest that the antibiotics might be responsible for the sudden disappearance of symptoms and then I read Mrs K's reply to you (we must be on the same wavelength!).
You have never at any stage in the past I suppose been bitten by a tick? Someone posted here a few years ago in desperation about his wife's long time pain thought to be PMR. I queried a tick bite, she had the relevant test which proved positive, was treated with antibiotics and recovered.
I also met someone who had exactly the same symptoms as me and at the same time 5+ years ago. His GP put him on a short course of steroids plus a longer than usual course of antibiotics and he recovered. At the time it led me to wonder whether PMR could be nipped in the bud at the outset by a certain antibiotic over a longer term than usual.
However, as Mrs K has said, it didn't last in the case of someone else and, of course, we know of other sufferers amongst us who have been on antibiotics for one reason or another and haven't had your experience. Food for thought though, Beev.
So sorry to hear you are still suffering and good luck with those blood tests.
MrsOxx
Hi
No, this happened before I was on the antibiotics. I'm wondering if it's down to the inhaled asthma med??
I am in a dreadful state actually - am afraid I have ovarian cancer.
Re the \"UTI\", my urine sample came back as having high WBC count so doc said probably infection but then the culture came back and there are no bacteria. Now I'm thinking its not an infection, but O C!!
Beev
Hi beev
I am sorry to hear you are feeling so unwell I dont understand why you would think you have Ovarian Cancer ??
I would have think a meeting with your Dr would be in order and tell him your fears
I hope you fears are unfounded and you feel better soon
Mrs G
Beev
There are many reasons for having a high white blood cell count and one of them is steroids! Others include auto immune disease and vasculitis! I had a similar abnormal blood test result when I commenced steroids. My husband has been referred a couple of times when such cells are found in his blood but each time he has felt well and no disease has been found - they now ignore such results.
I'm unsure what has led you to believe you have ovarian cancer - is it because of the CA125 test? I do so hope you receive your results soon and that your worries are unfounded.
MrsO
I actually wanted there to be bacteria and infection! That would have explained the horrible cystitis feeling I have.
Over the last 6 weeks, I have had vague stomach aches (every day) - moving around. I thought it was my new medication (Carbocisteine) for the mucus in my lungs. Eventually I stopped it and the symptoms continued except that they have moved down to my pelvic area - severe discomfort, having to go to the loo a lot etc.. The only symptom of O C I don't have is the bloating.
I had the blood tests today - am dreading the results because I'm feeling worse and am SURE I have something dreadful.
Am trying to get a private scan to minimise the wait. My GP was prompt about it but everything seems to take so long in this situation.
Beev
Beev
I really feel for you. You have had such a rough time of late and now you have this extra worry - I have everything crossed for you.
MrsO
Beev, the anxiety could well be aggravating the symptoms, couldn't it?
Well worth paying for a private scan. Thinking of you. Let us know.
Nothing to say here until you have some results except:
most of the time it ISN'T something nasty
and
even if it is - things are, in most cases, not what they were 20 years ago (know about that, been there, got the T-shirt, well, second hand)
Don't worry (I know, easier said than done) and there is no reason why PMR shouldn't just disappear if the autoimmune bit burns out so the symptoms would disappear. Re antibiotics - a colleague in Hungary used ab's for his wife's \"something very like PMR\" that didn't respond to pred except at very high doses. Nothing is impossible.
thinking of you,
Eileen
Thanks all
I am feeling very frightened as the 2nd course of antibiotics doesnt seem to be working - well I thought it was then today its gone backwards. Odd pelvic sensations and occasional aches, odd sensations \"down below\".
The 2nd urine sample had nitrites on the dipstick - waiting for the lab results. Bet it will be \"no bacteria\"!
Frightened to get the blood test results poss tomorrow and the scan is on Tuesday.
I am convinced I have OC.
Did you know, the wait for an urgent referral is 2 weeks and then 2 months before op?!! It would really have progressed by then.
Beev
Just bear in mind that 2 weeks isn't that much in the great scheme of things and the consultant will only have a clinic 1 day a week. As for the 2 month to op - there are lots of things to do in that time that must be done anyway. OC doesn't grow that quickly, it's finding it in the first place that poses the problem. The latest results are very good in fact - like liver cancer it is no longer a death sentence.
But the OC you meant WAS obsessive compulsive wasn't it :wink:
Eileen
Beev,
You sound very frightened, and I really feel for you at the moment as you seem to have convinced yourself that you have something sinister going on.
I had a lot of strange symptoms at the start of my PMR journey, which could also have been attributed to a malignancy of some sort.
I had a full bone scan (which took nearly an hour to complete) and a gynae consult with pelvic ultrasound. i also had the ca125 test, and thought that hubby didn't know what it was for, but discovered later that he had googled it :cry:
thankfully, nothing showed up, and the pelvic pain that I had was blamed on a small fibroid :wink:
If, and only IF, it does turn out to be something more serious, bear in mind that OC is not the same awful diagnosis that it once was. I have a friend who was diagnosed 5 years ago....has had chemo & surgery & is probably fitter than me at present.
Good luck with the results and hope you get some peace of mind soon.
Best wishes,
Pauline.
Hello friends
Well, I am SO relieved :D . The CA125 was normal and the scan showed nothing at all!
So its all a huge mystery. Saw GP again this morning following scan yesterday. She thinks I did originally have a UTI because of the high WBC count in the first sample.
She also thinks that I've been under a huge amount of increasing anxiety (understatement of the century) since July, with the lung probs and now this.
I also told her that I have been having some very odd sensations eg, last night was woken by stomach discomfort just below centre ribs and nausea, then later by very weird uncomfortable sensations of my whole innards shaking/trembling. I thought it might be down to anxiety but couldnt understand it because I felt so happy yesterday not to have the dreaded OC (you might be closer to the mark with your version of OC Eileen! :wink: ).
She explained that although I am no longer anxious, the body's physiological reaction to anxiety doesn't turn off that quickly. I'm sure she's right. She must think I'm a right headcase and she would be right!
Thing is, I still have very low back ache/throbbing (by coccyx) and sometimes my whole pelvic area, front and back, seems to go into a very uncomfortable, niggly spasmy thing. Do you think that could be anxiety as well???
Thank-you all for your helpful suggestions and sympathetic comments. I don't know what i would have done if I hadn't got PMR! I would never have met you all! :wink:
On that subject, I'm down to 2.5mg every 5th day. Do you think I can stop altogether now?????
Beev
Hi Beev
Glad you feel better after your trip to the Dr I am sure anxiety can cause all sorts of things in your body and with all of us on steroids our Adrenal glands for the fight and flight thing are no longer doing what they should
I personally wouldnt just stop the steroids get some !s and throw a 2 in then 1.5 ( if you can cut them !!) then a 1 over a few weeks and see what happens You can always go up as we all know !
Hope you feela lot better shortly
Mrs G
Beev So glad you have had good news.
The mind is a bugbear sometimes and plays such tricks and if you are already suffering anxiety for whatever reason every other niggle joins in and magnifies.
Give your self a super treat to celebrate and hopefully to relax and then the bugbear mind will go into reverse.
Sorry this comes up as a quote. I pressed the wrong button first time (new topic insread of reply ) so being lazy pasted instead of repeating. It's the thought that counts as they say.Best wishes Betty
Hi Beev,
I am really delighted for you, as you sounded soooo scared before :cry:
It will probably take a while for you to start feeling \"normal\" again, as you were so anxious, and even though you have been given the all clear, it sometimes takes a while for it to sink in :roll:
I know that even after I was given the all clear from my bone scan, I still had days that I envisaged what the alternative might have been.....I kept on wondering about chemo, wigs, etc, which was silly in hindsight, but sometimes its hard to control what comes into your head :?.
Its a bit like when you have a near miss in an accident...you automaticaly start dreaming about what another outcome might have been 
You are doing really well with your steroid reduction at present, but my advice would be to give youself a bit of time to get over this trauma and then start going down again slowly.
I hope you have had the chance to celebrate your great news, but if not, here's some virtual bubbly !:bubbly:
love,
Pauline.
Beev
Glad its all over for you and the right result.
I would not take a drop in your steroids at present. Give yourself time to recover and remember that no more than a 10% drop is recommended once you are on 10mg and below.
You will probably suffer some withdrawal symptoms as well so give yourself a chance and wait for at least four weeks.
I bet your GP did not suggest you take a drop and that if you had asked, the answer would probably have been wait a while. In the grand scheme of things what is a month.
Good Luck.
PS I get the shakes, but a small brandy settles it down.
Hello Beev
What a tremendous relief for you. Now if the continuing pains really have been caused by all the anxiety it sounds as though you could do with some alternative therapy to restore your equilibrium - how about some reflexology for instance?
I remember that you tend to reduce the Pred in 2.5 doses to avoid the 1mg uncoated tablets so I can understand how you've reached 2.5 every 5th day. That's great news but if it was me I would stay where you are for the moment until you feel well and less stressed.
I do hope you continue to feel better, Beev.
MrsO