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

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  • Posted

    There are also many thousands of BP patients suffering from the side effects of their medication because their doctor doesn't listen! Many end up in hospital every year. They like to try the latest fancy stuff because \"they are bound to be better\" and often end up mixing things that don't work well together.

    If you feel different and not better after starting a new drug - always ask and stand your ground until you are happy.

  • Posted

    Hello Eileen (hope you had a good journey) and all

    Some good news for me at the GP appointment today. I made the appointment to ask for a repeat DEXA and had a list of other things I wanted to check. However, I had hardly got through the door and before I had a chance to speak he said \"I think we must be due to check your BP, do you mind?\" (he knows I absolutely quiver at the thought as it's been such a problem in recent years!). Wow - it was 144/80 - 5 months ago it was 150/88 and I thought that was good then as the systolic (top) reading has been as high as 170-180 in the last 10 years or so. I didn't mention it but I'm sure he probably knows that I haven't been taking the diuretic he prescribed. :oops: Then he checked my weight and said I'd lost half a stone since last time. :D I wonder whether the weight loss could be the reason for the reduction in my BP or it could be something in my anti-inflammatory diet perhaps Wish I knew so I could bottle it. :lol:

    Battle commenced over the DEXA! :roll: He said that I wasn't due one for another year as they only do them every 3 years. I referred to the steroids and the fact that the last scan showed osteopenia of the spine but he still wouldn't budge and started spouting statistics at me - I'm sure if he took my BP again then, he would have got a very different reading! :x I stuck to my guns and said I wanted the reassurance of a scan and eventually he said \"Ok if you really want one now, you can have it but you will not have another one for the next 3 years\"!

    I talked about my Vit D test result reading of 54 several months ago and queried if this should be higher. \"No, anything between 25 and 120 is normal\". He also asked who'd sent me for this test as he never requests it (I had taken advantage of asking a locum who was sending me for blood tests for my throat infection over Christmas! :wink: ).

    I've got a fair bit of pain in the muscle at the top of one leg so he gave me a blood test form to check the ESR and CRP as he wanted to get the eGFR kidney function test done anyway.

    I thought I'd drive straight off to the hospital and get it done and over with. Arrived at the hospital, glanced at the blood test form and noticed that he'd ticked boxes for Glucose and Lipids.......both fasting boxes!!!!! You'd think he'd have mentioned that.......you'd also think I would have looked before driving to the hospital!!!! So a very exciting day, what with changing beds, doing the main weekly wash, ironing and baking. :roll: Looking forward to tomorrow though - friends coming from Wales and favourite Italian restaurant booked!

  • Posted

    Hi Mrs O

    You sound on fine form with all these things going on and all this activity !!

    Im glad your BP has improved as well and great news having lost half a stone !

    Have a good weekend with your friends

    Mrs G

  • Posted

    Thanks, Mrs.O for all the info re BP meds and Eileen for the warning. I'm a natural sceptic and as far as I am concerned less is more.

    I reckon that some of the deficit problem ( if there is one! ) could be solved by persuading people that there is not a pill for every ill and many things sort themselves out on their own. Also there is no prescription for eternal life. Well, not in this world anyway.

    I love the doctor who said that all this stuff about needing 2 L of water a day is rubbish. People and occasions vary and the body has an excellent warning system called thirst. ( Guardian, yesterday )

  • Posted

    Betty

    I read the article about water in my daily paper, too. We really have to take everything we read with a pinch of salt, don't we?!!! I think most of us know exactly what we need to eat and drink to be healthy (forget PMR&GCA! :roll: ). However, I do remember reading a very long time ago that we do need to drink water BEFORE we actually feel thirsty as once you actually feel the need, your body is already dehydrating. I suppose I'm more aware because of having just one kidney for most of my life but no way do I drink 2L a day - probably more like 1L but, of course, other liquids such as tea, soup and all the water from veggies is extra liquid isn't it.

    Mrs G

    Thanks for those good wishes - unfortunately, had an early morning call from our friends to say that their visit to us is cancelled - they received an SOS from their daughter to say that baby grandson is ill so can't go to nursery and they had to take up baby-minding duties from 7.30 this morning! Mike and I will still go for the Italian meal though - any excuse! Plus I need an excuse to wear a new dress I bought in the sales in Windsor on Monday! :lol:

  • Posted

    Oh what a shame Mrs O but enjoy your meal anyway

    Having a quiet day today felt a bit tired had a busy week so my friend and I persuaded each other on the phones as she was very busy that we didnt want to go to a coffee morning we were supposed to go to !!

    Mrs G

  • Posted

    I am not taking AA. My doctor told me that I could have a DEXA scan done after I had finished taking steroids!! I self referred and had a DEXA scan done privately. I am down to 9 mgs of pred and shall not be taking AA.

    I have never been offered a Vitamin D test, although I believe I understand that if your levels are not right you can take AA and it will not make any difference. Mrs O was your doctor surprised or angry that you had had one done.

  • Posted

    The guidelines say dexas should be done more often for longterm steroid patients since if there is going to be bone density loss it can be much much faster. Download them from the pmr gca northeast support site and show them to the doc. It comes from rheumys who are meant to know what they are about. :roll:

    Eileen

  • Posted

    Gabriella

    What planet are these doctors on....what's the point of a DEXA scan AFTER steroids? I also took myself off for a private DEXA at the outset of steroids just so that I could have something to compare with at a later date. I'm glad I did because the first scan was normal but the second one 2 years later (which the rheumy did agree to! :wink: ) showed osteopenia.

    Yes, I believe your point about Vit D needing to be normal for AA to be of benefit was mentioned here some time ago. My GP was obviously surprised that I'd had the Vit D test done and with hindsight I'm glad I did request it from the other Dr (I think he was new to the Practice - hope he's not in trouble now! :roll: ) because it was apparent yesterday that if I'd asked my regular Dr he would have refused. My Vit D test was done towards the end of the winter so I would expect that the level has now increased with the summer sunshine. I believe we need to ensure we make the most of any sunshine up until September so that our bodies are stocked up for the winter. I do eat lots of oily fish so get some Vit D from that as well.

    Perhaps your Practice might have a new young Dr you could cajole into doing the test? :wink:

  • Posted

    MrsO

    https://patient.info/health/Vitamin-D-Deficiency.htm

    Yes it is on this site and it makes interesting reading.

    And in the diagnostic procedures for both PMR and GCA it quite clearly states that a Vit D test should be made to rule out Vit D deficiency before a diagnosis is made.

    In our local health authority a Dexa scan is arrranged for anyone who is on steroids (at a high dosage) at six months into the steroids. This is repeated either annually or bi-annually, depending on the dosage, length of time on steroids and age.

    The NHS introduced DEXA scans for all women, past the menopause and also over 60. This is a preventative measure, because a Dexa scan costs approx £19-20 whilst a hip operation costs well over £16,000.

    Sounds like the NHS got it right at the top - it just does not filter down.

  • Posted

    MrsK

    Thank you - as you say, \"interesting reading\". No chance of getting Vit D from the sun here today, more chance of getting rusty! And more rain promised for the next few days.....aaargh!

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