Still Puzzled....

Afternoon

Still feeling stuck, puzzled, not sure what the words are..

Been to see the Maxillofacial Consultant today - referred by my Rheumy Consultant re the GCA. Rheumy felt needed some further support/understanding of what might be going on with me. The Maxi guy was not really able to assist - thinks there is muscular issues, not working properly - auto immune system basically not playing ball. He now has referred me for MRI - CT booked for Monday, but as he said this is more about boney bits rather than soft tissue which he feels should be inverstigated further - look at how the arteries etc are working - poor circulation.

This Max guy also said biopsy not done correctly - too far down to get a result, but now not able to redo as previous op will have stemmed the blood flow. Also querying if there might have been some nerve damage caused.

His only suggestion was diazipam/amitriptilyn to try as muscle relaxant for a week or so - not able to take either, and really don't want to feel any more 'knocked off'! Botox apparently might help, now not available on the NHS - so only alternative is heat packs...

Head really bad today - just not resolving, reduced steroids today to 50mg - been 55mg last 2 weeks and 2 weeks prev on 60mg. They still think it is GCA, just particularly resistent... (that is rather an understatement)...

Least having a couple of days off to try to get some ME time and relax, back to work on Weds, although GP not a happy bunny about it - but I need some control of this horrid thing, it aint gonna beat me!

Sorry real moan, but feeling fed up today - most unlike me.

Thanks for reading - any thoughts greatly welcomed, especially from those who also have a particularly resistent GCA to..

Happy times ahead..

Hazel x

[Polywotsit PMRGCAuk team member]

Dear Hazel

Please please go on sick leave - you are really ill! GCA is a medical emergency, and a serious illness. The steroids in any case will only deal with the symptoms and not with the underlying problem. Your immune system doesn't have a chance of settling down if you don't give it a chance by taking some time off.

I'm very sorry to hear that the biopsy didn't yield a positive result. However, this happens in a lot of cases. Most often it's because the surgeon who carries out the procedure doesn't take away enough of the arterial tissue to get a sample of a giant cell. The national TABUL study, based at Oxford University, is testing out whether ultrasound might be a suitable alternative to the biopsy for this reason (and because the biopsy is an invasive procedure which, as you state, carries the risk of nerve damage. Hope this hasn't happened to you!).

Not surprised you are feeling fed up! If the steroids really don't work, they will try some alternative like methotrexate. Keep us posted. Email us on [e-mail] with your home address and we'll send you a GCA information pack.

K

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Hi Kate

Many thanks for you email - am on MTHX, been injecting 20mg for about 4 years for the RA. There are worries due to the amount of medication I am on is masking many of the issues. I already take.... wait for it, MTHX, Salazopirine, Meloxicam, Omeprezole for pre existing RA, and now 50mg pred (from today), plus dyhrdrocodeine slow release 90mg twice daily with paracetamol 4 times daily.

Thing that is causing issues also is gastritis - hence the omeprezol and jusy got up now for some gaviscon - nothing muc helps.. Eating is a problem, trying little and not so often, have lost about 10lbs or so in last few weeks..

I know that there was a real possibility of not getting a positive result with the biopsy, they had huge problems achieving getting a section in the first place due to being unable to find free flowing blood - even used a doplar several times and stated the circulation was so poor.

I have also become a real night owl lately - never sleep for long periods and get so uncomfortable. night sweats, not being able to sleep on my left side (GCA side), break through head ache, restless because of steroids etc etc...

Oh and MOON face to boot... But as they say, life goes on and I count my blessings daily - 3 grown up children, 6 grandchildren, great hubby (10 years younger) and still only 52 with lots of living to do - booked a week away in North Wales to head off to in 4 weeks time - Snowdonia watch out..

Thanks, again Kate, will email my address to pmrgca.

Regards

Hazel

[jinasc]

Nuttyana

You need a Cardio Consultant. GCA is in the Vasculitis spectrum.

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HI Hazel

Sounds like you are having a really rough time. Not sure if my experience will help because these illnesses and treatment seem so different for each person.

I am 54yrs, diagnosed PMRGCA 2 years ago. GCA very resistive,have had approx 3 occasions when I have been up to 60mg of pred but every time I managed to get below 20mg I had visual disturbances headaches etc. Also tried methotrexate and leflulomide but to no avail. Eventually had a course of chemotherapy, cyclophosomide, 6 treatments in 3 month period. So far so good ( fingers and everything else crossed ) I have managed to get down to 10mg pred and i am very pleased that my eyesight seems o.k.

As well as alendronic acid and omeprezole I also take 20 - 30 mg amytriptyline at night as without this I would not get enough sleep.

It is a very exasperating illness, although I am aware I am VERY LUCKY not to have lost my eyesight I do get rather down about it at times. Coping with the side effects and withdrawal from steroids has had a huge impact on my life. Constant fatigue is very frustrating.

I hope your docs find a way of managing this illness.

How on earth are you managing to go to work ? Please take as much rest as you can.

Best wishes to you

Mary Jayne

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Dear Mary Jayne

Thank you so much for your post - how very helpful. I am 52 years old and it appears many of the issues I am experiencing you have echoed in your past problems - it is reassuring to hear that I am not alone. At times I have sat back and thought am I actualy making more of what is happening to me.

Not heard of cyclophosomide, nor the fact of having chemo for this condition - worth a discussion with my rheumy maybe. Had tried lefluomide years ago for the RA - not successful, and as for amytriptyline, I have tried this several times, even reduced the dose to taking syrup, but get so totally knocked off that was not able to drive. The Maxillofacial consultant suggested it on Friday - also suggested diazipam but I do not want to be a zombie..

Have a busy week of hospital appointments etc next week - so fingers crossed, myabe, just maybe things will start to get better - I live in hope, always.

Thank you again - your post has given me such hope and reading on here makes me know I am not alone...

Hazel x

P.S. Might see from my post I am a night owl, yet again - oh to go to bed and stay there for at least more than 4 hours at any one time....

[Dibs]

Hi Hazel, you are not alone but I thought I was until I found this forum. As above I have tried alternatives to pred, such as methotrexate, aziathorprine, chemotherapy and they all helped me with my symptoms but my body, especially my liver, didn't get on with them. I was 45 when first diagnosed 4 years ago and I am now down to my lowest dose of 5mg.

Unfortunately I have sight loss, not complete, but enough to stop me driving and this has hit me hard as I live alone and in the country. But I have been given a bus pass, taxi to work and have found online grocery shopping actually saves me money! The real big issue I have is not being able to drive to see my granddaughter so much and see my son play rugby

( which I haven't missed for 10 yrs). But I have to remind myself I am lucky that my sight was saved due to the promptness of my GP.

I don't take the amytriptyline as like you I don't want to be knocked out but oh for one nights sleep. The best nights sleep I had was the last time I was in hospital (week immune system giving me septicaemia again) and the bed was, believe it or not, comfy as it was one of those Electric beds that I could put the back up, take the strain of the hip and buttock area and raise the legs. I am considering looking at one depending on price.

Good luck with your hospital appointments I hope you start to feel better real soon, and you are never alone on here.

Deb x

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Many thanks Deb. So sorry about your sight, for me not being able to drive would be horrendous - my job relies on it, it's my life line.

Funny how other things are similar - I shop on line, just a little thing to reduce stress and carrying, and saves money as you say. Prompt and effective GP - did not even want to see this GP (my own on leave), but he has been fantastic and he keeps my own GP upto date with my progress, or not.

Oh for a nights sleep...... My last reasonable night was actaully at my mother in laws whilst visiting about 3 weeks ago - only one of the 2 nights, but such bliss..

Have a good day.

Hazel x