GCA

[ritter]

Does any one know if I should be seeing a rhumey my doctor has never mentioned it, but maybe its different having GCA I was diagnosed via a biopsy last yr,but I am in such a lot of pain in my back and have been since last /September,any help would be good.Ritter

[steph1]

Yes it would be a good idea to see your GP i think most of us with GCA or PMA see both

Steph

[ritter in reply to steph1]

Thanks steph1,will mention it when I see him in 4 weeks time,CRP test came back to day number 2 whatever that means, and I have Neutrophilia in the blood,that is supposed to be down to long term steroids,have check that out and that seems to be correct although their is lots of other reasons as well,.thanks again steph.Ritter

[steph1]

Hi i would go before four weeks

steph

[ritter]

Hi Celtic,and steph1 how it happened went to docs on the 7th of Feb last year complaining of headaches had them for 5 weeks and immediately she asked lots of questions and that was that she said I think you have GCA she called it Temporal artoritis,by the 10 of Feb I was having a biopsy only in hospital for 4 hours.then went back on a regular basis for the next 3 months and then discharged to my GP,the lady that I was seeing was a registrar at the hospital.

The biopsy results came back positive for GCA, I think I was in shock for months its still very difficult to get to grips with been so ill.I statred off on 60 mg,s of steroids registrar brought me down far to quick and by the time I was discharged I was back up to 30mg.managed to get down to 8mg last year,now back up to 25mg.

But have still never seen a haematologist,have got appointment for xray on my back as I have 24/7 pain and this could be my fault as I refused the Alendronic acid 70mg last year,I thought I could manage on the food rich callcium,so they think I could have some fractures in my back,I dont think so I did break my back when I was 60,well snapped off 2 vertibras broke my elbow and wrist,dont do things by halves ,have had a Dexta scan and that was showing thinning,I think I,v been a silly lady not taking the tablets.

will ask the doc next week about the rhumy.thanks lady,s Ritter

[Celtic PMRGCAuk volunteer]

Hi Ritter

I'm surprised to hear that you aren't under the care of a rheumatologist having had a bopsy and been diagnosed with GCA.

Biopsies are usually arranged/carried out by rheumatologists if they and/or the GP suspect GCA. Once GCA was suspected by the 4th GP I saw when I became ill, he referred me to a rheumatologist as an emergency and I stayed under his care for several years with a starting dose of 40mgs and then discharged when on 2mgs.

In the case of PMR it's fairly common for doctors not to refer patients unless they have difficulty in reducing the steroid dose and following a couple of flares in the disease, although the patron of PMRGCAuk recommends at least one appointment with a rheumatologist.

[Celtic PMRGCAuk volunteer]

Hi again Ritter

Now that you have mentioned that you have suffered severe injury to your spine some time ago, perhaps that is the main cause of the pain in your back right now. As your CRP blood test result has come back with a reading of 2 which is perfectly normal, then it does sound as though at least your GCA/Temporal Arteritis is being controlled at the present dose.

I have spondylolisthesis (slipped vertebrae) and when I get painful periods, I don my support girdle and usually get relief within a few days. If you don't already wear one, and you pain is in the lower part of your spine, I thoroughly recommend.

[ritter in reply to Celtic]

Hi Celtic,when I broke back that was 2003,I renovated a 300yr old property 3 months after that and have never had any pain before untill this GCA came along last year.The doctors trying to say its my fault for not taking Alendronic acid tabs,maybe he,s right but I do have a calcium packed diet but he said that my body may not be absorbing it due to my age. well I suppose he could be right again

,did you go to docs for support girdle or buy one? when I broke it years ago I had what looked like robo cop you put that on over your clothes but I give that back to the hospital years ago.only had it for three months

kind regards Ritter

[hiawatha]

Hi Ritter I agree with Celtic your GP could be good but you must see an expert I have Tempral GCA and have a lot of tests ask your GP and the best of luck to you

[ritter in reply to hiawatha]

Hi hiawatha,

can you remember the names of the tests as my GP will give me them if I suggest as he did last Tuesday,I had bloods taken again and I asked him for a CRP test and liver & kidney,he,s good but it is me that asks him not the other way round so he will do them if I know what to ask for. regards Ritter

[Lawrie]

Hello Ritter,

I do suggest to get some tests run, like an MRI. I had horrible back pain with PMR, my GP sent me to a Physical Therapist (PT), she was wonderful, it took about 2 months but I got rid of my back pain, and learned alot of good pointers to help me along the way.

Pray you get better!

Lawrie

[ritter in reply to Lawrie]

Hi Lawrie thanks for the advice,I am going for a XRay on 14 Feb and will see what that shows and if not satisfied will suggest MRI,the back pain is still bad,but since uping the steroids on wednesday to 25mg from 20mg it has taken the edge off,still bad but I dont shout out with it now.

Having said that I thought I would be reducing not the other way,I have almost lost my hair now and I had hair just like yours in fact it was identical to yours and I know its the least of my problems but I do miss it and its cold without it.

kind regards Ritter

[Lawrie in reply to ritter]

Ritter,

So glad you are getting an Xray, I understand so much about the back pain, Im so sorry.

About the hair, mine has been thinning since on steroids for a year now, I take Biotin and lots of Folic Acid per day. I started on the folic acid around Christmas time, it is really helping me and my hair.

Good luck and God Bless!

Lawrie

[ritter in reply to Lawrie]

Oh what a pity we are miles apart,I am in the north of England very cold country,would just like to thank you for your help and advice and I will be asking my Dr about the folic acid and biotin on my next visit,are you still on the steroids Lawrie and if so what dose mine has been put up to 25mg per day as my ESR,s went up to 25 its all so very frightening thank goodness for the web site.kind regards Ritter.

[Celtic PMRGCAuk volunteer]

Ritter

To answer your question about my support girdle, when I was first diagnosed with a slipped vertebrae years ago, the hospital measured me up and made a corset for me. It was boned, with straps and loads of hooks and eyes, a bit of a devil to put on but it really stabilised my spine. I was able to go for some years without it and then when I had a relapse I found that it no longer fitted! The hospital made another but I found it quite useless and really uncomfortable and was told that my original one was no longer available. I then bought a Playtex support girdle and whenever I have a problem I find it helps within just a couple of days.

As your DEXA scan showed thinning of your bones (osteoporosis?) then it does sound as though you need some bisphosphonate-type medication to help build them back up. A DEXA scan showed my hips to be fine but my spine to be in the osteopenia range (the stage before osteoporosis). I'm not on any bone protection at present but I have just started on a Vitamin D supplement as I have been found to be deficient.

Like you, I eat a calcium-rich diet but, as your Dr has said, as we age it is possible that our bodies my not be absorbing sufficient calcium for our bones. If deficient in Vitamin D, then a supplement will enable more calcium from your food to be absorbed into your bones. I also read a paper recently that said steroids can interfere with the way Vitamin D works in our bodies, so a very good reason for those of us on steroids to request a Vitamin D blood test, and supplement if necessary.

I do hope you get some answers from your Dr next week, including referral to a rheumy.

[ritter]

Thanks Celtic,for all that information,I do appreciate the time you have give me in your reply,I will be having another blood test in 3 weeks for my ESR so will also request vitamin D level test at the same time and as I understand that number needs to be in the 70,s at least 150 would be good is that correct?I think I read that on our web site.what part of the world are you in Celtic? is their a clue in your name by any chance,havnt lost my sense of hum er yet,but what I am loosing is my memory,or may be thats my age,funny how I had a brilliant memory last year at this time,right am going to cleam my chickens out been threatening all day.

Thanks once again Celtic,.Regards Ritter.

[Celtic PMRGCAuk volunteer]

Hi again Ritter

Yes, around 70 seems to be an ideal level for Vitamin D. My local Health Trust quotes between 70 and 200 as normal, whilst my friend's Trust quotes between 70 and 150. Mine stood at 36 before starting the Vit D supplements so hoping for better results at the end of the course in 3 months time.

Ritter, I'm in the South East of England (Surrey) so a long way from you oop North! Think it would be too cold for me where you are - we're a bit soft down here in the South! There is an excellent PMR/GCA support group in the North East by the way.

Don't worry if you feel that your memory isn't what it was last year - steroids can cause brain fog! It does improve when down on the lower doses though, I promise.

Well while you clean out your chickens, I/m off to feed my cat!

[ritter in reply to Celtic]

Hi celtic,yes its b freezing up here,managed to get chickens cleaned out,have got more pain to day in back when steroids went up on Wednesday back pain subsided slightly and has lasted till today but starting to get back to plenty of pain,still at hospital on Thursday for normal xray see what they say?.

Thanks again celtic for the support its really comforting,and yes I am going to our meeting in March its in my diary but I think its the 27th.

mind you looks like you are getting some snow tonight hope you dont get to much,

kind regards Ritter.