Giant cell arteritis support

[cassey1879]

Does anyone know a support group in the USA can't seem to find one for GCA

[PMRpro Ambassador]

There were a couple of forums in the USA but they disappeared into the ether - one suddenly was coming up on my firewall as "infected" a few years ago and the people who had contributed there joined the Patient.co.uk PMR/GCA and the NE of England forums. Both those forums currently have several members from the USA, Canada and Australia. The NE of England forum in particular functions like a virtual coffee morning group - there is chat about everything in life: grandchildren, holidays, pets and problems whether they have anything to do with PMR/GCA or not. There is a photo section as well. It was developed to act as a virtual support group for people who didn't have access to real life ones - and many of the members are also members of such groups, some of them having got those groups going themselves.

I believe there is one forum (through Yahoo I think) but although I haven't ever joined it (far too complicated I decided) I have been told it is a bit strange with some quite bigoted contributors. The forums here in the UK are all associated with medical charities which make sure they are well and quite strictly moderated. Which I suppose may mean WE are bigoted - but the information gained on them is reliable and not from the less respectable corners of the internet!

[Hidden in reply to PMRpro]

Have you looked at: vasculitisfoundation.org/ed...

It's not specifically for PMRGCA, but does have quite a lot of useful information for all types of Vasculitis, and based in the US. xx

[olive2709]

Stick with us kid i have been here since September when diagnosed with GCA . Great place for all kinds of help

Olive

[cassey1879 in reply to olive2709]

Thanks Olive, you guys seem to know a lot more then over hear, LOL

[DeliaGray]

I live in the USA. I was diagnosed with GCA last July. I found that the Drs. here know very little about it and treating it. I have a wonderful GP. and Rheumatologist here in San Francisco They are both quite happy for me to follow the advice of the British Drs. on treatments, and I have recently printed out the papers I have researched from England and given them to my DR. upon his request. There are not nearly as many cases here. I would be very happy to correspond with you should you wish. One can feel kind of lonely here with this thing.!

[PMRpro Ambassador in reply to DeliaGray]

There probably aren't many cases in California - it is most common in people of Scandinavian ancestry and some of the older major research was carried out by groups in Olmsted County, Minnesota. In Europe the incidence falls as you travel towards the Mediterranean but, strangely, some of the biggest and most active research groups are in Italy and Spain!

We enjoy having people from other countries on the forums here because it adds to the variety of information we gather so don't run away. Some of us are actively involved with the research groups in the UK so it is important - just in the last few weeks new members from the US have backed our belief that being over 50 is NOT essential to develop PMR!

[DeliaGray in reply to PMRpro]

Thank you for your response, and for your information. I am doing really well, and this week was able to get my prednisone down to 10 mg. I started in July at 80 mg. as I had had 4 ocular migraines and my eye sight was failing .My rheumatologist lowered it too quickly and I had a flareup, and that was when he told me that maybe I should follow the British Drs'. advice.. Since then I have had no problems. I live on the top of the steepest hill in San Francisco and have a dog which I walk 3 times daily. Anywhere I go I have to climb these steep hills home. {Not complaining because the views are fabulous.!} Now I am pleased to say that I am walking 6 miles daily, plus at 76 years old I still work full time. I am so very thankful for my GP who despite its rarity here was able after 2 weeks of blood tests back in July, to diagnose GCA and get treatment started. Then my rheumatologist told me that I also have PMR. The previous year I had attended a chiropractor 3 times a week for shoulder and back and neck pain which was severe. That immediately left me once on the prednisone.

I have gained much help from this website and will continue to be a part of it. . Thank you all.

[cassey1879 in reply to DeliaGray]

Thanks, he is to hard to fine even doctors they are really up on GCA. Took me weeks to convince my Dr. I had it. Even then it was the eye doctor who insisted on having a biopsy. I am seeing Dr. in Phila. at Wills Eye and scheduled beginning of April to see another in Phila. Anything you can tell me would be really helpful. I was on 60 mgs. of Prednisone, 12/1 the Dr. reduced in 3 wks. to 50, then 3 wks to 40. Phila. Dr. said too soon and is worried. So still on 40 and not seeing the other STUPID Dr. Have been on this site couple of months, but was not sure how to get an answer, or respond. Hope that you get this.

[DeliaGray in reply to cassey1879]

Cassey, my biopsy didn't come back positive but I had every other symptom even being British.! They were positive that it is GCA. Then I discovered that I had pmr and had had it for over a year. Yes the reductions of prednisone can get very frustrating. I was immediately put on a dosage of 80 mg, as at that point I was on the verge of losing my sight. I was at 80 for 6 weeks, then 60 from a month, then 50. 40. but my body reacted when I went to 35. I got to 35 by using the method of introducing the new dose one day the first week, 2 days the 2nd week, and so on until it was accepted. I used this method until I got down to 15 mg. I stayed at all of these dosages at least a month after being advised that one needed to take reductions very slowly. Since I am very vain I was trying to get off my excess fat. I have never been overweight before. I have now decided that it is better to be alive, see, and fat, than blind and dead.!!! I reduced to 12.5 after just 2 weeks at 15, then 10 last week after 2 weeks at 12.5. Well, after 3 days at 10 I had another ocular migraine where my sight was gone. I was a mile or more from home with my dog in the park. I got home, and took another 25 mg. and my sight returned. I have now gone back to 15 mg a day, and will stay on that for one month. Then I will try a 1 mg. reduction at a time for a month each. It is so frustrating but I am so very thankful to be 76 and be able to still work full time, and live in such a wonderful city that I am not going to compromise my sight again.! Please keep in touch, and I hope that you will be able to be a little more patient than I have been and not have relapses. I appreciate every day. I tell myself daily that," yesterday is history, tomorrow is a mystery, and today is a gift. Enjoy the day.

[cassey1879 in reply to DeliaGray]

Thanks, you are very encouraging not to go down to quickly. Been on 40 for almost two months, but will talk to Dr. this week about blood work and see if he wants to slower it. Do you still get headaches (in temple area)? And the jaw pain. My Dr. at Wills Eye said that sometimes when a person in on Prednisone for a long time and high doses that their Sed. Rate always stays low, so he feel is more important to go by symptoms, especially the jaw claudication. It is so nice to talk to someone who has GCA and understands. My brother has had the PMR for over 4 years, and still on low doses, every time goes off, gets pain and is back on. Now, not sure if I ever had the PMR first (in Oct.) as read where GCA can also cause shoulder as well as lower back and hip pain. I could barely get out of bed or walk. With only 15 mgs. could jump out of bed in one day, but he did not have all the head pain/neck and jaw which did not go away. Again, so very nice to chat with you, it is just so comforting to finally talk to someone that understands. Don't worry about your weight, like you said better to gain a little than be blind or dead. You can worry about the weight later when you are feeling better. That is about the only side effect I have not gotten yet, LOL. Finally getting better with the Roscea and Acne, and think hair not falling out as much. We have to laugh, better laughter than tears, LOL. Hang in there, again, sol nice to meet you. Don't go on line every day but now know how to pull this up, I think.

[Hidden in reply to DeliaGray]

Reading your post has given me hope back.As a newly diagnosed sufferer, completely out of the blue, it was so reassuring to read about the bumpy road that is ahead, and to realise that any visual blackout is not absolutely final.

I hope you keep well. We dog owner s need to ab le to get about

Living in central England and now retired I have so many things to do that this seemed life changing at first.

Very best wishes to you

[DeliaGray in reply to Hidden]

HI again. I have a trip booked for July to come to visit family in England, however, my crp level is rising again and I am thinking that I may postpone it until I am more stable. I am at 15 1/2 mg of pred now, but still experience a lot of fatigue. I get a little frustrated when I remember that I have been diagnosed with GCA/PMR for a year now and still have flareups.! Other than that things are going along well. Hang in there, expect setbacks, and plough through them. Things will be well. have a great day today. Delia.

[jinasc]

Just to let you know that the Americans are working and collaborating on both PMR & GCA for cause, cure, diagnosis and treatment and friendlier medication.

You can use your search engine for the following:

ACR/EULAR International PMR Guidelines Group

OMERACT PMR Working Group – working towards a core outcome set for use in clinical trials of PMR

In August 2008, an International Press Release on PMR & GCA contained these words

" These illnesses also mainly affect women, and an estimated 100-200,00 suffer from them in the UK – and in America their Baby Boomer population is estimated to include around half a million affected."

Finally, the National Medical Research Foundation located in Arizona with Chapters throughout the USA might be worth a look at.

nmrfoundation.com/

NMRF is a non-profit organization dedicated to finding a cure for Polymyalgia Rheumatica and Giant Cell Arteritis.

The profile of PMR & GCA has been raised since I started on my journey 8 years ago.

Finally as Pmrpro says stick with this forum, join Patient.co.uk and pmrgca.forumup.co.uk

No worries as all are well moderated and all associated with well run charities and Patient.co.uk us run by and used by professional medical people.