Negative TAB

[Boozsa]

So the biopsy came back negative. I don’t really know what to say other than I still believe PMR/TA is what is wrong with me. The problem is I will never get diagnosed or treated at this point unless something a doctor can see/confirm presents it self. So maybe it will get better or maybe worse, who knows. I feel without a future... can’t make plans because of pain and symptoms, can’t work( I went from full time to part time and now on call with days I still can’t do) relationships are falling apart, I mean I don’t even want to hang out with me, basically home bound and doing anything I can (legal) to manage pain without a doctor on my side. Sad but enough whining... thanks for all the info and support.

[piglette]

As you have probably read, if you are already on pred it is highly likely any biopsy will be negative. You can often have a false negative anyway. It sounds that you are not being given enough painkiller to stop the pain, can you talk to someone else? They can’t just expect you to have pain and just say the biopsy was negative so go away can they?

[Boozsa in reply to piglette]

I had a fast reponse to 60 mg then 40 of prednisone but was taken off due to my age (44) and normal ESR my CRP has been mildly elevated at times and now the neslgative TAB. Tried to get back on prednisone doc said no too many risks and I’m not on any pain meds. I’m not being treated for anything now. It’s unbearable and hopeless at this point. I feel for the undiagnosed it’s torture.

[piglette in reply to Boozsa]

Why on earth did your doctor put you on pred in the first place if there are too many risks? I had trouble at the beginning being diagnosed. I paid to see someone privately in the end. I could not have stood the pain much longer. Can you see another doctor or go back to the current one and say how much pain you are in? If you make enough fuss they may believe you.

[Boozsa in reply to piglette]

How long did it take you to get dignosed if you don’t mind me asking? They put me in prednisone in August for a week and half because they finally thought it was PMR/GCA but took me off when they couldn’t get a specialist to agree and see me. Then I was finally referred to a vascular doctor who referred me to a surgeon who did the TAB, now with this negative doc won’t put me on prednisone but also has no other treatment plan. I have an appointment on Feb 25th to follow up so I guess I will just have to wait to see what happens, I know the risks just don’t have a choice. I can’t afford a private doc or a naturopathic doc so I can only see doctors my GP is willing to refer me to.

[piglette in reply to Boozsa]

I suppose in all it was about four and a half months although I had pain before that but just thought I had been overdoing it. Can you go and see your GP again and say how much pain you are in. Also can you get any documentation that says that if on pred it would be quite possible to get a false negative. Most doctors just forget you the minute you walk out of the door and assume everything is OK unless you come back again. Did they take blood tests for CRP or ESR.

[DorsetLady PMRGCAuk volunteer]

Hi

Many have a negative response to TAB even though (to us that know) they do have GCA.

You can only hope that a sensible doctor realises that symptoms are the key - always! Plus your response to the steroids.

I wish you the best.

[Boozsa in reply to DorsetLady]

Thank you

[GOOD_GRIEF]

I'm sorry. I'm not familiar with your medical system, but isn't there something like an urgent care center or emergency room you can go to for treatment?

Can you get copies of all your medical records? Can you go doctor shopping until you find someone who can at least hear you?

[Boozsa in reply to GOOD_GRIEF]

It’s complicated but here is the short version... Your General Practitioner or Primary Care doc has to refer you to other doctors like rheumatologist or neurologist, I have been to ER or Urgent care and they only treat the immediate problem ex. Pain, nausea and send you home. Most GP doc have a long wait list to be seen (2 years for the clinic in the town next to mine) I do have a sinus doctor that I may be able to see and try to get back on prednisone but it’s a long shot. My age, my “normal” inflammation markers and now the negative TAB make doctors not want to treat me for PMR/GCA even though I have the 2 weeks of doing well on prednisone. Go back and read all my posts. It tells the whole story and all of my symptoms

[patriciawhite]

I was nearly 18 months to 2 years with all of the pain and misery Self employed I worked until I dropped I had to .I dont know what the answer is .You cant get the damn doctors to diagnose anything now a days .I sympathise and can only suggest you keep trying different doctors in your surgery .Get your eyes tested ask the optician if they can see any thing .It was a routine eye test that brought it to my doctors practice attention .The optician saw some thing and wrote to the doctor .I was fortunate to get to see a locum who wasn,t just repeating what the last notes on my file said .He recognised PMA I will be forever grateful to him .Try the optician if you havnt already .

[suzy1959]

I'm sorry this has been so hard for you. It took me 2 years to get a definitive diagnosis, even though I was seeing Rheumatologists privately. Luckily, my second Rheumy put me on Pred. even though he wasn't convinced. My first Rheumy had refused to give me any more Pred.even if I begged him! I didn't continue to see him! So, it was a PET scan that showed my inflammation up definitively.

Are you in the UK? If so, it is possible that your GP could refer you to one of the Rheumy's that we might recommend- Dr. Hughes, Prof Dasgupta, Dr. Mackie and maybe others- for a one off second opinion? These Rheumy's don't charge a lot for a one -off privately either -around £100 or so- might be worth it?

Many of us have tales of difficult Rheumy's and GP's, so a lot of us have had to become very active in finding the right Rheumy who really understands PMR/GCA, and to inform ourselves about our condition.

By the way, PMR is not diagnosed by a TAB. There is generally no conclusive diagnostic process for PMR except symptoms and reaction to Pred.

I was young (52) when I got it and did not have the "right" symptoms. Luckily, I did have raised markers- who knows how long it would have taken if I hadn't had those markers.

[Boozsa]

Thank you both for your stories about getting diagnosed. I think I will create a post for people to tell their stories about difficult diagnosis and maybe if I show them all to my GP, I can at least get put back on prednisone and see if I improve rapidly again. I am in so much pain and the last 2 weeks I’ve had pain behind and to the side of my eye with swelling and dropping of the right eyelid. I will make an appointment with the eye doc today. I have seen an eye doc once in the very beginning and I showed a kinked appearance to the optic nerve they just wanted to watch yearly.

[Carrollee]

Hi Booza

So sorry your in limbo. I was being treated for pmr when I started to get typical GCA symptoms so my doc upped my pred and fast tracked me to GCA clinic. Consultant felt it was GCA but wanted a biopsy done (been on 15mg for around 10wks at that stage) Biopsy negative but she felt that due to my symptoms I should be treated for GCA. So a negative biopsy should not be a reason to conclude there is no GCA. I was told there was a 50/50 chance of the TAB being negative even if I had the condition. Now this clinic use ultrasound instead of TAB. All the best cc

[Nitrobunny]

44 is precisely the age I was Dx with PMR by a doctor who had an eagle eye and a good sixth sense. My ESR and CRP had been up and down and in later years would skyrocket. I had the typical shoulder and hip pain and scalp tenderness. My rheumatologist back then scratched my scalp with her nails and I about jumped off the table. She told me back then to never let anyone tell me I have to be much older to have PMR. I went on to develop other issues later including GCA three years ago that started with the worst headache of my life and blindness that was temporary in one eye. I couldn’t speak properly either. It was as if I had a stroke. Thankfully I didn’t. They rushed a biopsy and then infused lots of prednisone while the doctors argued that they were wasting valuable time by doing the biopsy. It was positive. No one ever wants to have to be on prednisone for long term and no doctor wants to put a patient on it for long term without weighing the risk versus benefit but for a doctor to just exclude it because of your age despite symptoms and your past response to prednisone is nothing short of cruel 😓

Wishing you the best - be well~