GCA ? | Arthritis Information

Last year I was hospitalised with Vomiting and Diahoea then lots of blood from the bowel.  Inflammatory Colitis was diagnosed after a colenoscopy. This past week I have had blood showing in my faeces.

 I am on 4mg Pred and my ESR and CPR have gone up, again.

My Dr is looking for GCA or scarring from GCA that I may have started back in 2005/06.

or/and Bowel inflammaion that needs further investigation.

Also been started on 15mg Methotrexate and Folic Acid.

Any advice on anything welcome, Lyn

 

In June 2005, I had a biopsy and there was nothing to it. The scar is just where the hair starts, so it cannot be seen and it was very small anyway. I didn´t feel anything and it was over quickly and nothing afterwards. I just had to get the stitches taken away after a week or so. I had flown over to a 50th class reunion in Glencoe, MN a day after the biopsy (I had been an exchange3 student there). My wife helped me to cover the white band aid in my temple with skin coloured surgical tape so I wouldn´t have big white spot in my face - especially not in the class picture. Nothing could be seen on the picture!  A week later my wife took the stitches with the scissors from a Swiss army knife and she had dipped in in gin from a miniature bottle that we got on the Atlantic flight to sterilize it. She was afraid she would cut me but it all went well. I have told this before, but I think there is a "new generation" with persons that have got pmr so I repeat this story.

 

They didn´t tell me that they were really looking for GCA (which I had), so I didn´t know that until 1 ½ year later from my GP. However, I had to styart with 20 mg Pred which seems to be alow dose if you have GCA. After 3 ½ years I was free from Pred in December 2008 and I have no side effects except that I went back to my original weight - I had lost 10-15 lbs before diagnosis and start with Pred.

 

As you understand, there was no problem with the biposy and no pain or anything else. Good luck

 

Ragnar

The " no pain or anything else " is good to hear. I have become a whimp!

Yes, there is a new generation on board and they are just like us ... looking for information and comfort.

I am so pleased you are still well and that you still take time to give encouragement ect.

Hugs    Lyn

 

Yes I have the sweats, or as I heard the other day,...........I percolate!

Soon as I try to/ or just finished puting makeup on I had the bi-lateral biopsies about 12 days ago......ended up having some damage to a facial nerve and now my forehead won't stay up. It hangs down and covers the upper half of my right eye, so I have to use paper tape to hold it up off my eye. I still don't have the results of the biopsy, but am now being treated for GCA. (started high-dose Prednisone treatment 4 days before the biopsy) Within 36 hours, the awful GCA symptoms I had been living with were clearing up. (I also have PMR, diagnosed in late May, and I had been on lower dose Prednisone for that)
My biopsy was done by the general surgeon that my rheumatologist sent me to. I am wishing I had been sent to a plastic surgeon, who has more experience with fine arteries and nerves. Live and learn.

The GCA had been causing double vision for over 2 years, and intermittent sore areas on my head, but my rheum doctor still did not want to treat me for it due to my "sort of normal" sed rate and CPR tests. (all while I was on Imuran and Plenequil for my RA for a long time----might have skewed my tests?)
I am one of a very small percentage of people whose blood tests are not difinitive to diagnose GCA.  I also have had the very rare painful & swollen tongue..........7 weeks of it!  I got so bad wth all the symptoms one weekend that my husband took me to the emergency room. Nothing was done!!

It was at the STRONG urging of my opthamologist (at one of my regular exams with him almost 2 weeks ago) that the GCA treatment began, and I do feel that it saved my sight. My many symptoms were increasing daily over the 2 weeks before starting on 60mg Prednisone. The opthamologist felt it was an emergency.

The awful night sweats and hot flashes are finally letting up today after suffering with such intense ones for over 10 months. The release from constant pain has been a blessing!

I wish I had pushed my rheumatologist to treat me before this, as it has been such a rough time, especially the past year. Now I have to try to get through some other orthopedic surgeries while this GCA is brought under control, and I have some kind of surgery coming to fix the forehead droop.  If my rheumatologist had been willing to just try the high-dose Prednisone and not insist on the biopsies, I would not be facing a surgery to fix my facial nerve and my body would have shown that I did indeed have GCA when it responded so well from the Prednisone.

I am so sorry that you have been going through such tough times and are facing even more.  It makes you wonder sometimes why these Drs. feel the need to make you wait so long for a definitive answer.  You will be in my thoughts and prayers until this has all be settled.

Take good care.

I am so sorry you have / having such a terrible time from the biopsies. Hello.   I've not posted here before but had a similar problem with going undiagnosed for way too long.    I finally self diagnosed my gca & polymyalgia thru internet search after months of  misery & symptons.  I then went to the Dr., and told him what I had, he was very doubtful but did order blood work.  After 3 wk. of not hearing from the lab work, I called his office & was told that my sed rate was over 100 & I might want to see a rheumatologist!  The office scheduled my appt. for 2 mo. from that time.  As I didn't want to risk waiting that long, I called & was able to get in within a wk.   I finally did have a biopsy & gca & polymyalgia was diagnosed.  As this was in Mar. 08, I've now been  on prednisone & methotrexate for 17 mo.  My original pred. dose was 40 mg. & I'm  down to 8 mg.  I'm so sorry that you had problems with the biopsy.  Mine was sucessful but I do know that there is a  risk of nerve damage.  It is a  wonderful feeling to have the vision symptons, the awful chills & the most horrible night sweats stop !  After I started the prednisone,  everything started getting better so quickly.    I actually  had gca first & was treated for mo. with different antibiotics for sinus infections (?) .  It was probably 6 mo later that the polymyalgia flared & I seriously started trying to find out what was going on.    I am so disappointed that as expensive as our health care is, it is so incompetent.   I had moved away for a few yr. & didn't really  have a Dr. here  but was going to the same express clinic thinking they would keep following up & pick up on something.  Then when I did find a Dr., that was a let down.  I recently did start with an new internist because I knew I needed a Dr. other than my rhematologist,  &  I think I make her as nervous as a cat on a hot tin roof!  Maybe we'll click eventually.  The ironic thing is, I was so healthy & seldom go to the Dr. unless I can't avoid it.  I doctored more & took more medicine in that 6 mo. & it was accomplishing absolutely nothing.  Sorry I've gone on so long but don't share my story often because I feel it would just be too tiring for most people to listen to.  I so sympathize with your long suffering, makes you feel like you've lost a chunk of time, doesn't it?  My wishes for you are that things improve very quickly and that anything fixable is a success.   In that undiagnosed span of time, I feel so fortunate to have not had a stroke, permanent vision loss or (hopefully) anything else permanent.    Hope you feel better every day and that things go well for you!  Sending you a huge hug from Kentucky.Dear All

I am without words at what some of you have experienced in getting a diagnosis and treatment for both pmr and gca.

However, can I suggest that you visit  www.pmr-gca-northeast.org.uk and read, and if necessary print off - the BSR & BHPR Guidelines under Resources and also read What is PMR and GCA on that site.

The NMR Foundation located in the USA is also working towards cause and cure as is PMR-GCA UK located in the UK.  Both are charitable organisations.

Knowledge is power and you need knowledge.


My own rheumatologist was not familiar with the rare painful tongue symptom. But I was able to google "GCA & painful tongue" and found cases noted in medical papers and books.
My tongue is just now beginning to be more comfortable from the high-dose Prednisone. My vision is TOTALLY clear and crisp.......first time in over 2 years!  Eye pain GONE, lower back of skull pain GONE, jaw ache GONE, neck pain 90% gone! Still get very fatigued easily, though.

My rheum doctor now has me testing my blood sugar levels every day to watch for any chance that the high-dose prednisone might push me into diabetes. So far, no high readings at all.
I just lowered from 60mg Prednisone to 55mg, and am doing well with the dose change. (I was at 60mg for 2 weeks)

My rheum doctor is concerned about me going ahead with my bi-lateral knee replacement surgery in med-Sept, but we have put off the knee surgery for 3 years, and the longer I wait it seems that the more health issues I get, so I have decided to go forward and do the best I can to deal with the GCA, PMR, RA, and the surgery. I have just healed enough from spine fusion surgery (6 months ago) that I feel I can handle things. Hoping for a much better year in 2010!!

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