Eliz

thanks Linda and thanks for getting back so quick, I will ring my doctor, iwas away  for weekend and had half bottle of red wine on both nights, before weekend I had been on strict diet cutting out all sugars and carb and drinking ginger and orange and eating fish, do have cold on me for last week, I'm new here, hope your feeling good

Thank you, I`m gettin there.... slow but sure is the answer it seems.  We`re all here to support each other, we can`t all know the answers, but I`m beginning to think we are more clued up on here than the medical profession. (Eillen is a treasure! and others of course)  I feel sorry for those people out there who don`t have a forum to consult!.....

Thank Karen, 

thanks Boronia thank u so much for ur help and all the information

i did contact my doctor and he told me to go to A and E.i was treated as emergency, i was diagnosed with GCA and put on 60mg and i was a dmited . which is wherei am now.i was so wortied yestetday

Thank you for updating us on your condition. So glad to hear that you have come a long way since yesterday. Now that you have a diagnosis and a course of treatment, I hope your worries have been allayed somewhat. Please get some rest and enlist the support of all those around you as much as possible so you can forge your way to recovery in the days ahead. And you can count on a large host of supporters on this forum.  You remain in my prayers. Best wishes.

Well Its been a long week, ( I live in Dublin, Ireland )

you were right, they said I had severe GCA also known as Temporal Arteritis, and it was treated as emergency and was put on 60 mg pred.

I was lucky from point of view I was seen by consultant Rheumatologist

and got the best treatment,

except the first night Tuesday sitting in a chair which is unacceptable ( felt sorry for really old people in chairs,

the next day Rheumatologist put everything into motion, she got vascular team to come and talk to me about biopsy and she arrange a full eye test and got me a bed,

i had biopsy on Thursday morning ( results back in week)

they told me to stay in hospital till I felt right, but wasn't sleeping so came home last night. But got the best of treatment they were so nice.

and I'm back next week.

my head is sore and have headache and jaw pain ( which they know about)

I'm sure other people have had biopsy and wondering how they felt?

did they feel sore,  have headache and jaw pain? Even though on 60 mg pred the support and everyone one is so caring thanks

 

Good - you've had ideal treatment. Not good-  you have GCA but at least there was a silver lining to the cloud and you are on a dose that means you shouldn't have any eye problems.

REST!!!!!!!  This isn't a cold - and your body needs lots of TLC.

Hope you feel loads better very soon

Hi Eliz,

It's good to hear you have received such excellent care.  Something we don't hear often on these discussions. I don't have GCA but I'm sure you'll hear from someone that

Sorry hubby came by and I hit the wrong button😕.  

You'll hear from someone that has gone through the symptoms and diagnosis.  

Take good care of yourself and hopefully you'll be feeling better and the pain will go away soon.

hugs,

Diana💕

 

Oh what a horrid few days you've had, Elizabeth, but I'm so glad that your GCA was quickly recognised and the steroid dose increased accordingly.  Although I've had both PMR and GCA, my diagnosis was so certain that a biopsy wasn't deemed necessary.  40mgs proved sufficient for me and I had almost immediate relief in my head and jaw pain.  Hopefully, your headache and jaw pain will resolve in the next few days, although it isn't surprising to have a bit of a sore head following the biopsy.  However, don't be surprised if your biopsy proves negative as once we have been on steroids for more than a couple of weeks, it is likely that the large cells they are looking for will have resolved.  Plus, the enlarged cells can sometimes escape the tiny portion biopsied.

Your blood tests, particularly the CRP, should be repeated in the next few days to confirm that the 60mg dose is controlling the inflammation.

Importantly, remain alert for any problems with your vision, in the case of which you will need to return swiftly to A&E for the steroids to be further increased.

I do hope you will continue to feel better, but don't let anyone persuade you to reduce those steroids too fast again in the future.  Take care.

 

It's great to have you on the forum, your our rock. You have reassured me that little bit, thanks and hope your doing ok  thanks xxxx

About your question about reaction to the biopsy: I did not have any pain at the biopsy site or jaw, or any headache.  I did have the typical tender scalp for a day, which I found alarming, but it went away completely then.  The doctor said he may have bruised the nerve during the biopsy.   Also, the artery spasmed badly during the biopsy, which may have affected the nerves or scalp.  

Are you experiencing the same pain you had earlier, or something new after the biopsy?

Are you able to sleep at home?  I had the worst insomnia of my life while I was on 20 or more mg of prednisone.  Oddly enough, this went away after a couple of (grim) weeks, as many of the prednisone side-effects seem to have done.

Since you will be on high dose prednisone for a while, I hope they are doing something to avoid osteoporosis.  My rheumatologist described this as an "effect," not a "side-effect" of prednisone.  Side-effects happen to some people, he said, but the effect on the bones happens to everyone with a high cumulative dose of prednisone. I know enough to avoid the biphosphonates if possible, but (between the devil and the deep blue sea) decided to have an intravenous dose of one called Reclast in the US, good for a year.