Biopsy and cutting pills
Posted , 8 users are following.
I have been free from Pred since december 2008. This spring I have felt some fatigue and have gone through a lot of examinations. To-day it is probably 3 months since they started to try to find out what was wrong and I toook a biopsy in my right temple. Exactly six years ago - some days before Midsummer Eve (that we celebrate in Sweden, this year on Friday the 24th) I had my first biopsy in the left temple. That was the final decision that I had pmr and GCA. To-day, the surgeon didn´t think I had any inflammation in the vein where he made the biopsy, and they have tested me for pmr and GCA about three months this time too. I will know in some weeks what the lab says. Somebody asked some time ago about the biopsy. There is nothing to it. I went to the Day Surgery of a main hospital and after a local anaestisia, it probably toook 15 minutes to finish. If the surgeon had found the right type of vein it could have been faster. Now I have a bandage around the head and will take it off to-morrow and just keep the patch for a week. It didn´t hurt at all.
Sometimes, there is a discussion about cutting the tablets and some persons are afraid that the halves or the four pieces won´t be exactly the same size (and strength). Some persons use \"Ragnar´s method\" and if you follow that, it doesn´t matter if the tablets are not the same size as you spread it out during some days and finally have the full tablet. I used to break the tablets by hand in four pieces.
As I have written before - I think that it is better to be painfree than trying to reduce the pred too fast and possibly get a flare. What is the good thing about lower dosage if you have pain?
I hope that Mrs K is feeling better now that you are preparing to taper to 2 mg. You are helping so many persons by your very instructive answers and I therefore wish you good luck in your own tapering. Also best wishes to your cousin
Ragnar
Good luck all with tapering - there is an end of the tunnel!
Ragnar
0 likes, 26 replies
MrsO-UK_Surrey
Posted
I'm so sorry to hear that you are again having problems after being clear for such a long time - let's hope the consultant is right and the biopsy proves negative. Have you been doing anything very stressful that could have made you more fatigued?
We already have MrsG and BettyE posting on here who are experiencing their second bouts of PMR and I really do hope that this isn't going to apply to you as well.
You are my hero as I have followed your regime and successfully managed to reduce below 5mgs to my present half a mg a day. I don't feel as good as I did on 1mg - a little more stiff PMR-wise and very fatigued over the last few days but ok GCA-wise so far, fingers crossed.
Ragnar - I'm rooting for you and I'm sure everyone else looking in will be doing the same.
Take care and good luck and do come back and let us know how you get on, please.
MrsO
BettyE
Posted
The biopsy news sounds hopeful and thankl you for explaining the procedure in such a reassuring way. I just have PMR but we never know what's round the corner.
I'm fascinated that you can break your pills into four BY HAND. How? Are Swedish pills different from uk's? It's all I can do with my stiff hands to pick up whole ones. I use a Boots pill cutter fairly successfully and I don't worry too much about any uneven sizes. As you say, it evens out over the week.
Once more, good luck.
Mrs_G
Posted
Six months before my PMR came back after a dose of flu at Xmas and another throat bug in the March I had the traditional PMR pains Rushed to Dr , blood tests ordered ,she gave me a prescription just in case it escalated but when I saw her in a few days all pain gone and bloods were fine and she was relieved I hadnt taken any tablets !! We then had a discussion started by me \" Do you then have a weakness in these muscles and will infection head there ??? rather like people with a weak back muscle She didnt know but its a possiblity in my mind as I didnt ache anywhere else
Yes I am amazed you can cut your pills that small too as mine are the sort that are so small they are difficult to pick up !
Best wishes
Mrs G
Nefret
Posted
I don't think we have 'met' before, but I have been a follower of yours for years and I feel I know you well; thank you for the info on the biopsies as I think I may be having one this summer.
Nefret
Ms_JH
Posted
Ragnar, I do hope that your current problems are not GCA. We all look upon you as a knowledgeable friend and we have celebrated your success in banishing the deadly PMR. But on a related note, do we know whether we really get over PMR or does it just go into remission? Or does it go into remission in some of us while leaving others for good? Have the doctors done any work on that aspect do you know Mrs. K or Eileen?
Best wishes to all for a good day,
Jill
mrs_k
Posted
I am glad to hear from you but sorry that it is not so good news.
Ragnar, GCA is a 'vascular' illness and it can attack other arteries, you really need an MRI or Cat scan to make sure it has not morphed into the other arteries. A temporal biopsy won't show this up.
On the second question, about does it go away forever. The current answer is that the jury is out on this one.
As there is currently no known cause or cure. PMR goes away in its own good time - but it really just goes into remission. It then either never comes back or does come back. It has a mind, all of its own, and until research is done and the scientists come up with the answer, we live in hope, that once bitten, twice shy, might apply.
Ragnar, keep in touch and remember to update your story for us, when you feel the time is right.
I wish you well and sincerely hope that one day you may just visit the 'Angel of the North' and I can put you and your better half up and have a long natter.
No I am not the Angel, I just live 5 minutes away from him/her.
margaret.r
Posted
I've still got the pmr after nearly 5 years. I've reduced to 2.5 or 3 mg three times now, and each time had a gradual return of syptoms. This happened a month ago, along with a sore scalp. That was a good test of how fast the medical system here reacts! Answer; very fast. I was in the hospital within 12 hours of mentioning it to the gp having already had instructions to take the 60mg of prednisolone that I always carry with me.
It turned out to be a false alarm, but it's good to know that things move fast round here when they have to.
Hope you get good news soon.
Margaret
MrsO-UK_Surrey
Posted
MrsO
margaret.r
Posted
I've been away for the weekend, hence a delayed reply.
The instructions at the hospital was to follow the 60 mg with 30 mg the following day, and then revert to 5 mg. The consultant I saw (who went away and had a discussion with 3 others) was that doing the biopsy was not necessarily going to show a definite positive or negative because of the steroids already taken. With the GCA symptoms being so minimal I needed to return to the lower dose, and watch carefully for any further symptoms, in which case I will be seen immediately.
I had already agreed with my GP that I go up to 5 mg, having been on 3.5 mg and getting a gradual increase in pmr symptoms, so that is what I'm on now, and the scalp sensitivity hasn't returned.
I do have a somewhat different pattern of pmr symptoms returning after a drop too far. The first time was when I got to 1mg, and had to return to 5mg. The next two were when I got to 3mg, and again have had to got back to 5mg. I do the drop very very slowly, and sometimes have a time when I am very touchy (some might say bad-tempered), but I don't get the muscle pain of withdrawal. The I'm fine and stay on that dose for a couple of months till I try another drop. OR if the PMR symptoms are going to return I am fine for a about 4 weeks, and then the PMR symptoms return, but very, very gradually so that it's only after about another 6 weeks that I finally give in and accept that it isn't my imagination. I'd had my ESR taken about 5 weeks after the drop to try and it was up a bit, but not too much at that point.
As has been said before, we are all different
Margaret
MrsO-UK_Surrey
Posted
Oh, I do agree, we are all that little bit different in our response to both the illness and the steroids.
It does seems as though there are definitely similar sticking points though for many sufferers trying to reduce from 5mgs and 3mgs as you have experienced in the past.
After one flare and having to increase to 10, once I got back down to 5 my rheumatologist advised me to stay there for about 5 months rather than the more usual 3 months at each dose below 5. I'm sure that it was this, plus following Ragnar's recommended slow tapering approach, that proved successful for me. I have also been on 1mg for about 9/10 months before starting my recent taper to half a mg. Once I reached half a mg daily I seemed ok for about 12 days and then started having some odd days with tender leg and arm muscles plus a general feeling of weakness. Today has been a good day so difficult to know how much of this is steroid withdrawal (after 4+ years I'm sure my body is hooked!) or anything nasty returning. My main hope is that the GCA symptoms don't recur.
It's good to hear that, like me, you have blood tests to guide you - I'm sure I would have found it more of a problem without those as a guideline as I was never completely pain-free until the very low doses, unlike some very lucky people.
Do hope you had a nice weekend away and that the tender scalp keeps away.
Very best wishes,
MrsO
RD_Swede
Posted
Mrs K has given some advice and I have had scans and just about every examination that can be made but as I use betablockers (I have atrial fibrillation), maybe that´s why I have fatigue. The doctor told me that I am unusually spirited and alert to be almost 74. If I come up to the northeast, I will certainly get in touch with Mrs K and not only look at the \"Angel of the North\". We could also have a brandy together - it seems you like that.
Ragnar
MrsO-UK_Surrey
Posted
Phew.....not GCA! Great news! :D Also reassuring to know that you've had all the necessary scans and been given a clean bill of health.
Like you, I took a betablocker (Atenolol) for 3 years for high blood pressure and an irregular heartbeat prior to PMR/GCA being diagnosed. It really slowed my metabolism, increased my weight and made me lethargic. It also reduced my HDL cholesterol - that is the good component of cholesterol so I wasn't happy about that. When I was taken off it, the extra weight fell off immediately and my energy levels improved.
We'll all join you and MrsK in that \"brandy\"! :wink:
MrsO
mrs_k
Posted
That post made my day and it has made Mrs 0's as well.
I think your Doctor should come 'Up North' in the UK (OK Sweden is North) and meet some more feisty 70's onwards.
I had a thought when I was reading your post, did you ever get a Vit D test to see if you were deficient in Vit D. I only ask because if you read the articel in the December Newsletter on the website, you will understand why I ask.
It certainly helped my fatigue when I had the test and was so low it took 40,000 per day of Dekristol to put me back on track, with a booster 4 weeks later.I know have the test quarterly.
Maybe a different beta-blocker would help - but then I know absolutely nothing about them - its just I have got so suspicious about side effects.
Try and avoid hills :lol: with a wry grin having looked at the topography of Sweden. Mind Malmo was flat and lovely.
Looking forward to the brandy.
BettyE
Posted
Read an article in the Guardian this AM about adjusting \" oldies '\" meds so they wouldn't keep falling over. I guess BP meds are one of the culprits.
CHOICE, the buzzword.Can't you just imagine the conversation:
\" Well Mrs./Mr. which would you prefer, raised BP or a fractured hip?
[color=blue:48e09f9b02]Ragnar,[/color:48e09f9b02] youre just a baby. Years of spirited life ahead. Just look at Granny Moss.
MrsO-UK_Surrey
Posted
Towards the end of my first year with undiagnosed PMR, I was diagnosed with Chronic Kidney Disease Stage 3 (I have only one kidney) so I sought the advice of a private renal consultant. He didn't like me being on the Betablocker because of its metabolic side effects and said an Ace Inhibitor would be much better at protecting my kidney function from the high BP so prescribed Ramipril. However, within a week to ten days or so of switching, and then the GP increasing the dose, I got a worsening headache, followed by jaw pain, nausea/vomiting and lack of weight which resulted in one GP thinking I was having an allergic reaction to Ramipril, so prescribed antihistamine and stopped the medication. Three GPs later, plus various diagnoses and the prescribing of anti sickness drugs etc (owing to my pill phobia I took none of them) I was given a diagnosis of GCA and a return of what was now known to be PMR. My rheumatologist was of the opinion that switching my BP drugs whilst undiagnosed and untreated PMR was now lying dormant in my body may have triggered the GCA, although I feel it could equally have been triggered because I had had untreated PMR. A few months later, my GP decided to start me on another BP drug (Candesartan) - the following blood test showed an abnormal creatine level (connected to the kidney) so that, too, was stopped. Some time later, he prescribed a diuretic but I'm afraid I haven't taken it. I'm hoping that by endeavouring to lose as much weight as possible will result in getting my BP lower.
You can see I'm a real challenge to the Drs but I don't think they see it as a challenge...they just keep prescribing anything and everything! However, there are thousands of people taking BP drugs without any problem so don't go by my experience, Betty - you would probably be fine....I'm just awkward! However, if I remember correctly, your BP wasn't bad at all at the last reading.
That's interesting about \"adjusting oldies meds\" to stop them falling over - I've often thought that lighter weight women should be prescribed lower doses than men anyway. Do you remember someone posting some time ago and saying that a lot of falls among the elderly were being put down to the tri-focal spectacles - not sure if it was Rick?
I so emphasise with your thoughts on the other thread about wondering why eating an entirely healthy diet full of fruit and veg, not smoking (and in my case not drinking) and watching the weight should lead to any health problems such as our's! :roll: