Confused and need help please : Hello everyone, my... - PMRGCAuk

PMRGCAuk
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Confused and need help please

Hello everyone, my story is a long one I'm afraid so I'll be as brief as possible. I was diagnosed with GCA in December 2012 after a 15 week headache on the left side. Started on 60mgs of prednisolone and reduced fairly successfully to around 10mgs within a year after the introduction of methotrexate although I have felt absolutely dreadful throughout. ESR and CRP levels have been good throughout apart from once when I had a severe chest infection. Rheumatologist changed methotrexate to aizapriothene but still felt dreadful and unable to drop prednisolone without very painful side effects such as thoracic back pain, very sore breasts,muscle pain in arms and legs etc. Changed to micophenolate in March 2016. I had my last prednisolone tablet in October 2017. My experience with medication has not been good. Each additional drug over the 5 years has wrought havoc with my system, especially lack of sleep! I found steroid reduction difficult in that I was ok for a couple of weeks after each drop and then felt as if I'd been run over by a steam roller. This lasted for around 5 / 6 weeks then I felt better. I then kept repeating the process until I joined the zero club. The immediate clarity in my head and my ability to think again was wonderful. My body however has not been so good. Since October I have become increasingly decrepit. The pain and stiffness in arms, legs, back, neck and hands is awful and difficult to bear sometimes. ESR and CRP levels remain within acceptable limits so I'm told it's not a flare. I had a short synacthen test in January 2017 which I'm told was ok. Alendronic acid and calcichew were stopped in March 2016 and annual zolendronic acid infusion introduced. I have had 2 so far. One dexa scan in 2013 which showed osteoporosis with the lumbar spine T-2.7, hip T-1.9 (T-2.3 at neck of femur). Another infusion is planned for May. I've learnt an enormous amount from this group that I really, really wish I'd known about over the past 5 years. I suspect I was too fatigued (polite word for exhaustion) to research and even think about my options. I'm due to see rheumatologist again next week and any expert advice you have would be very much appreciated please. Additional meds are losartan and bisoprolol for bp and omeprazole. Thank you in advance.

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Oops I forgot to mention that I was also diagnosed with Orafacial Granulomatosis in August last year, another inflammatory condition.

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Read the leaflet that comes with the omeprazole. It states that it can cause aches and pains just like PMR. So drop it, if you need a PPI ask for Ranitidine (old name Zantac) and the best available and oldest.

Also research Bowen Therapy. bowentherapy.org.uk/

bowentrainingacademy.com/up...

In Australia, where is was developed you take a University degree course in it.

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Thank you so much. I've just re read the leaflet which I'm sure I did at the onset of this awful condition but failed to remember anything. I've been looking into the Bowen technique for a while. I'll now do it seriously.

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Personally I have no problem with doctors trying extra medication to "help" reduce the pred dose - but only when there is at least some evidence that they are of use. To my knowledge there is none for the use of azathioprine or mycophenolate in GCA. Top experts wouldn't expect a patient to get to 10mg from 60mg in much under 15 months at the very least - so why add in anything any sooner? Yes, taking pred isn't nice, but as you found, these other non-proven drugs weren't much better it would seem. Now the GCA-guru in the UK states methotrexate helps but only if it is included right from the start. There seems to be no point adding it later. And what size steps were you reducing in? Some people simply don't manage big steps - and we're talking more than 0.5-1mg at a time for some.

Are you sure the bisoprolol and losartan aren't adding to your problems? I have no problems with my very low doses of both but I know some do. Do you need omeprazole? Have you tried switching to ranitidine/Zantac?

Has anyone considered myofascial pain syndrome? It could account for your muscle pains. Bowen therapy MAY help - no promises but I enjoy it as a relaxation exercise anyway.

But above all - I think the rheumy MUST consider either whether this IS flare or whether you have developed another condition even if he is sure that it was GCA in the first place. Some patients never have a raised ESR/CRP to start with - and some who did originally don't develop raised levels after having been on pred.

I know one lady who was originally diagnosed with PMR and, very much later and reluctantly, with GCA. She was unable to reduce the pred without real problems. In the end she "went north" to see a PMR/GCA expert rheumy who was also somewhat flummoxed until it was mentioned that the back pain was worst in the early part of the night. Lightbulb moment: that is not typical of PMR but of ankylosing spondylitis (AS) which can be confused with PMR in the early stages. And so it turned out to be - the "PMR" was due to the AS and the neck involvement had cause blood supply problems to the head that had led to symptoms that are also typical of GCA.

And that brings me to a real flight of fancy: orofacial granulomatosis is thought by some to be a form of Crohns disease - and there is a link between Crohn's and AS. Has Crohn's been ruled out for you?

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Wow and wow, thanks. The GCA was biopsy proven and ESR & CRP levels were high at the time. I reduced very, very slowly once I got down to 15mgs using a method I found on the internet eg drop 1mg per week. Each time I had problems the rheumatologist out it back up to 10 and I started all over again. I'm using the cinnamon and benzoate free diet to see how that works on the inflammation in my mouth and lips. Back to Oral Medicine in a month to check on progress before investigating Crohns.

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Right - then at least it was GCA at the outset: the biopsy doesn't lie when it is positive! One question dealt with.

" I reduced very, very slowly once I got down to 15mgs using a method I found on the internet eg drop 1mg per week"

No - that is NOT very very slowly! 1mg per 3 weeks is slowly! Or using the approaches we go on about where you spread a drop over a few weeks, including days at the new lower dose and days at the old higher dose. For example

healthunlocked.com/pmrgcauk...

If you try to drop every week your poor body NEVER gets to come to rest. Having a respite inbetween makes it more tolerable.

But do tell us what your rheumy says.

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Sorry, I obviously didn’t explain properly I’ll try again. I dropped I mg per week and held for 4 weeks, then dropped another. Repeat, repeat. Once I started on micophenolate I went with the rheumatologists advice - 5 every day for a month, 5 / 4 alternating for a month, then 4 every day for a month and so on. So much for thinking the head was a bit clearer.

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That's better! Phew!!!!

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I’ll let you know what the Rheumatologist says next week. I’d prefer another scan before agreeing to the next infusion. Also like to discuss the need for omeprazol given the side effects I’ve just read about, including lip and mouth inflammation as well as muscle pain so it will be an interesting conversation.

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Not to mention preventing your body absorbing calcium...

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I missed that one, thank you.

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God bless you PMRPro. I looked at poor Joyce’s story and wondered who could unpick what had happened to her, short of ripping everything up and starting again. And of course you can, thankfully. Your patience and analytical brain are real gift.

Best wishes Joyce, stick with us. 🌼

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Doesn't mean I'm right. It was just thoughts...

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Your thoughts are like other people’s medical text books and we are all very grateful.

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As usual, Sheffield Jane, you expressed my sentiments about PMRpro’s information, knowledge and quick responses better than I possibly could!

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My thoughts absolutely Sheffield Jane, it'l be such a help to Joyce.

Best wishes

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I've learned more in the last few months than in the previous 5years. I'll be sticking.

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Joyce, you have had a hard time, I don't think my experience with Preds will help. I was diagnosed with PMR in mid 2010 taking 30mg daily. In 2015 I started to taper off but it took 2 years tapering off too quickly until 2017 when I really slowed down taking 1mg daily for about 3 months. Regards, Frank.

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Good luck. I felt a huge sense of achievement on reaching zero but now I don’t know if that was a good thing or not. Time will no doubt tell.

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Joyce, my mind boggles at all the many different drugs that your body has had to cope with - and sadly you aren’t the only one - but at what cost to the body I always think. It sounds as though you need the advice of a real expert/a second opinion. Are you happy with your rheumy’s care? If not, let us know whereabouts you are in case someone can recommend someone from their experience .

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That's very kind of you, thank you. I'll let you know how I get on next week

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Hi, I don't know where you live, but if in UK have you thought of going to a traditional Acupuncturist, to try and help your body cope with all the influx of drugs into your system. I have been going weekly for a month and then down to once a fortnight and I am convinced it has helped to ease things (plus she can often feel in the pulses things like kidney involvement). It is expensive (I pay £40 a time) but to me well worth it. But I know in other countries such as the States it is vastly more expensive.

But word of warning, don't be tempted to go to someone who has done a weekend course, or even 3 week course. My acupuncturist likened them to people who have done a first aid course, like St Johns Ambulance, thinking they can practise as a doctor! She has had 4 years training and been working for 36 years. British Acupuncture council is good place to start for people in UK.

I am currently going to hypnotherapy as well, which is really helping with getting more sleep, what a relief! GP confirmed that people with PMR etc will still feel tired even with normal amounts of sleep. I guess our poor bodies have to cope with a lot. And you have sure had to cope with so much. Keep in there and best of luck with the Rheumatologist.

Bridget

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Thanks Bridget, I haven’t tried acupuncture but I do have reflexology quite regularly. As you say very relaxing. I’m also interested in Bowen therapy so if anyone can recommend a therapist in the north east of England I’d love to hear from you. I’ll most certainly keep acupuncture in mind.

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My Bowen therapist was Joanne Hewitt who has a practice in Meadowfield (I think) and also works at NIHP in Sacriston

jhewittbowentherapyclinic.c...

healthnorth.co.uk/treatment...

She also worked with Paula Esson who was my first Bowen therapist and who teaches Bowen. Their techniques are slightly different - but both are good.

findatherapy.org/bowen_tech...

but I can't find anything to show where/if she still has a clinic. They had one in Gateshead but the contract to supply Bowen for UHND Pain Clinic wasn't renewed so maybe it has closed.

If you give Joanne a call she will be able to recommend someone nearer to you if Meadowfield or SAcriston are too far.

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It would appear that we have almost followed the same path, I initially went down with PMR In August 2012 and was very quickly stabilized with a prednisolone dose of 60 mg's / day for about 4 weeks, then progressively started reducing dosage I had times when as the result of a "flair up" I had to increase daily dose for a while - this was all done on self administering basis - but it worked.

After 1 1/2 years we tried Methotrexate , this did me no good at all , the treatment was breaking down my immune system, given we saw no improvement in my health we kicked that treatment into touch. GCA came along a little later for me ,I was 3 years into PMR before this struck - that is now under control with Bisoprolol Fumerate - for how long - I don't know. Prednisolone dosage is down to 3 mg's /day I have tried to reduce further - my body does not like it.

I have underlying joint problems - Spinal Stenosis being one of them so the chances of reducing steroid dosage further on a 77 year old is remote !

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"GCA came along a little later for me ,I was 3 years into PMR before this struck - that is now under control with Bisoprolol Fumerate"

Is there something i'm missing? bisoprolol is a cardiovascular medication - not for GCA...

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My sympathy to you , but you must believe you will get better, have faith. I think your symptons are more important than your blood results, so leave the rheumy in no doubt about how and what you feel every day. Best wishes to you.

OrwellMan

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Thank you, I'm trying. I thought I'd left the rheumatologists in no doubt but I think I failed miserably. She is convinced my pain is osteoarthritis because of the blood results and advised cocodamol 4 times a day. They didn't help the pain but did give me a foggy / fuzzy head just like prednisolone. Onwards and upwards til the beginning of April when I'm booked for ultrasound of both shoulders. I appreciate your kind thoughts.

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