Bilateral temporal biopsy on Monday

[Bro-]

It’s now 47 days that I’m being treated for PMR- GCA . My headaches have subsided in intensity , but seem to have new symptoms everyday-woke up Saturday with excruciating knee pains can barely walk/ ice helps! Bouts of trouble swallowing and numb tingly arms. My biopsies May come back false negative because I’ve been on steroid therapy. I just want an answer what is going on in my body. It’s debilitating and scary. The unknown of what are the next steps and how am I going to function daily. I’m on 30mg prednisone and Drs are puzzled as to why I’m not feeling that much better Sorry for the long post. I guess my question is has anyone had a false negative biopsy and still diagnosed with GCA?

[PMRpro Ambassador]

There are a few I think.

"I’m on 30mg prednisone and Drs are puzzled as to why I’m not feeling that much better"

Because if it IS GCA 30mg is highly unlikely to be enough as it is a neither/nor sort of dose: too much for PMR, not enough for GCA in the early days. 40mg is the usual bottom end of the range for GCA and some patients may need 60mg, even 80mg at the outset to clear out the accumulated inflamamtion.

I cannot believe how many so-called experts are unaware of the recommendations for initiating steroids in GCA:

academic.oup.com/rheumatolo...

Although it says BSR Guidelines, it is a document drawn up by a team of rheumies from all over the world.

[Bro- in reply to PMRpro]

I absolutely agree that I should be on higher prednisone I started at 60 and I don’t know why they lowered it I think because my symptoms weren’t going away so they thought why treat me for GCA if maybe it’s not that and I was having terrible side effects but I keep asking them to raise maybe I will be more persistent thank you

[PMRpro Ambassador in reply to Bro-]

How well did the 60mg work? 80mg is sometimes needed - and one approach is a 3 day pulse therapy with a very high dose of pred, up to 1000mg per day, as an infusion. Which obviously is very likely to work in any case of GCA! After the 3 days they drop to 60-80mg/day and then reduce in the usual way.

[SnazzyD]

This is tricky situation. You may have had Covid and are suffering from the long tail symptoms that can have a neurological flavour and musculoskeletal flavour. Answers seem to be thin on the ground for Covid. However, you may have not enough Pred for whatever else might be going on. 30mg should be ample for PMR type pain but not necessarily for something such as large vessel involvement. Even with my uncomplicated GCA I was on 40mg for 6 weeks initially and you are on 30mg after 7 weeks.

Just some basics first that may be clouding the picture -

Are you making sure you are not hyperventilating, especially if you are getting the tingling in bouts. It might be worth trying a paper bag during those episodes just to see. I’m not belittling your experience, but hyperventilating can be quite devastating and a body wide experience.

Are your face and neck getting fatter or rounder after 47 days of high Pred? Check to see if you have a ‘hump’ of fat just below the bottom of the back of the neck. Some people find that the fat around the neck affects their swallowing. When you say you have difficulty, what exactly happens?

Have you done anything with your legs or back that is unusual, however seemingly light? Even a long period of sitting.

Are the knee pains in the knee general or in specific places and are those places the same both sides? Have you had this before?

Re biopsy I had a negative biopsy and normal inflammatory markers but that did not change the diagnosis. They went on history and response to Pred.

[Bro- in reply to SnazzyD]

All good questions!!! I actually went for an antibody test because it just came in my head that maybe it is after effects of Covid that I should be hearing from that so that was a good point.

Also yes I do have anxiety that is heightened right now but the feeling in my throat is more of a numbing and I can’t get the saliva down it lasts like five minutes but I do know the difference between anxiety and that.Yes I do have moon phase and big fat bumps on the side of my neck sometimes I feel a pulse in that and that could definitely have something to do with my swallowing. I never had any pain before only from working out but this is very different it’s burning sensations in both my knees in the same spot they swelled up and getting a twitch in my right thigh I totally believe it has to do with GCA..My inflammatory markers were low to and I’m dying to see what my biopsy says but what you were saying that is you’re still diagnosed with GCA even with low inflammatory markers and negative biopsy??Can you be my doctor ha ha

[Bro- in reply to SnazzyD]

SnazzyD. I just replied to you but not directly I don’t think so just scroll

[Marijo1951]

My rheumatologist arranged for me to have the biopsy the day after she first diagnosed me. At the time I was feeling rather overwhelmed by everything that was happening and thought that she could have given me a few days at least to calm down. However I'm now grateful as the result was positive which might not have happened if we'd waited any length of time, maybe leaving a question mark about the diagnosis. I think there will be an improvement when all hospitals are able to offer ultrasound as a less invasive alternative to a biopsy.

I see from your notes that you started (as I did) on 60 mg of pred for GCA/PMR. I'm not one of the medical experts on the forum, but it does seem to me that, if after 47 days you're down to 30 mg, maybe you're reducing too quickly and are now on too low a dose.

[Bro- in reply to Marijo1951]

I agree with you and my biopsy should have been done weeks ago!! Not sure what they are waiting for. I was supposed to have it done last week but it was a miscommunication between two of my doctors. They said if it comes back positive they will raise my prednisone to 80 or even 100 not sure why they are making me suffer and not doing it now maybe because I had so many side effects

[Bro-]

All good questions!!! I actually went for an antibody test because it just came in my head that maybe it is after effects of Covid that I should be hearing from that so that was a good point.

Also yes I do have anxiety that is heightened right now but the feeling in my throat is more of a numbing and I can’t get the saliva down it lasts like five minutes but I do know the difference between anxiety and that.Yes I do have moon phase and big fat bumps on the side of my neck sometimes I feel a pulse in that and that could definitely have something to do with my swallowing. I never had any pain before only from working out but this is very different it’s burning sensations in both my knees in the same spot they swelled up and getting a twitch in my right thigh I totally believe it has to do with GCA..My inflammatory markers were low to and I’m dying to see what my biopsy says but what you were saying that is you’re still diagnosed with GCA even with low inflammatory markers and negative biopsy??Can you be my doctor ha ha

[Bro-]

I agree with you and my biopsy should have been done weeks ago!! Not sure what they are waiting for. I was supposed to have it done last week but it was a miscommunication between two of my doctors. They said if it comes back positive they will raise my prednisone to 80 or even 100 not sure why they are making me suffer and not doing it now maybe because I had so many side effects

[SnazzyD]

Yes I was indeed diagnosed with negative biopsy and normal (though not for me) inflammatory markers.

I do think you need to be a bit persistent now and try to get some explanations or rationale. They need at least to give you some thoughts on your throat, pulsing and other symptoms. Could be due to larger vessel involvement. However, the trick is to not let your anxiety and complete exasperation make you sound unhinged, even if it is perfectly understandable if you are. An advocate is good for those moments when you just want to cry so they can take the baton from you.

Have you actually seen a Rheumatologist yet or are you still at the mercy of the doc and Opthal?

[Bro- in reply to SnazzyD]

Yes I’m also seeing a rheumatologist- but I lean more on my eye dr and GP. I called them every day with my symptoms they are probably tired of hearing from me but I don’t care- There was a miscommunication with my surgery it was supposed to be last week so they are frustrated they want answers just as much as I do! Thank you for your support

[Bro-]

Yes I’m also seeing a rheumatologist- but I lean more on my eye dr and GP. I called them every day with my symptoms they are probably tired of hearing from me but I don’t care- There was a miscommunication with my surgery it was supposed to be last week so they are frustrated they want answers just as much as I do! Thank you for your support

[1Unknown12]

Hi. Just keep an eye on prednisolone side effects. Like you the rheumatologists didn't understand why I didn't feel better on three weeks on 60 mg, and nearly two months on 40 mg and tapering since January. With hindsight I should have questioned the rheumatologists and highlighted the side effects on the leaflet in the box to them to them. If all your results come back near to normal consider talking to them about side effects. It's been a year of hell for me and I wouldn't wish it on anyone. For me the side effects were very similar to my condition GCA. By that I mean headache. Eye pain, jaw pain, face tenderness and then the body aches. It's not doom and gloom prednisolone is a great steroid but it can have a nasty bite for some people.

Take care of yourself.

[Bro- in reply to 1Unknown12]

Good to know! Thank you . That’s what the 60 was doing to me So I couldn’t differentiate between GCA symptoms or the prednisone that’s why they started to lower it

[Pr0jection]

This may already have been covered. My symptoms, which prompted my rheumatologist to book a GCA biopsy, were brightly coloured flashing images in both eyes. He immediately put me onto 15mg prednisolone and 5 days later the surgeon arrived at the clinic to perform the biopsy. When he discovered that I was already on steroids he was reluctant to do it. He had examined me and found a strong pulse. However, due to the insistence of the rheumatologist, and the fact that it's acceptable to be on low dose steroids for up to a week before a biopsy is carried out, the surgeon agreed to do it. Had I been on a much higher dose he would have refused. I had a negative result thankfully.

[PMRpro Ambassador in reply to Pr0jection]

But the negative result there was NOT conclusive - it isn't anyway, but since you were on pred, even less so.

[Pr0jection in reply to PMRpro]

Not according to my rheumatologist who has spent his working life on auto immune illnesses, was the head specialist in an Athens teaching hospital. He knows his stuff I can tell you! He questioned both the surgeon and the pathologist at great length and I have a full path report. As I said, up to one week on low dose is OK according to the experts. The surgeon could see a strong pulse when he made the incision. At the time the biopsy results came through I was clear. However, that doesn't mean I'm clear forever, but I'd rather put a positive spin on this, than a negative one.......

[PMRpro Ambassador in reply to Pr0jection]

I didn't say the biopsy can't be positive after a week of pred - what I said was that a biopsy can be negative even though the patient has GCA. There are several reasons for that - including the fact it isn't affecting the temporal artery yet or something called skip lesions where areas that are inflamed alternate with healthy areas. A positive biopsy is 100% proof it is GCA. A negative one doesn't mean you definitely don't have GCA, it means they have no evidence one way or the other. Having a good pulse was probably an indicator there was no GCA there - but it doesn't mean it isn't affecting other arteries,

[Pr0jection in reply to PMRpro]

Thank you for your input. All this was explained to me at great length by my rheumy and my surgeon, but it's good that others will see your comments. This illness can be very fickle. Remaining positive is key for me.

[Bro- in reply to Pr0jection]

Thankful your result was negative! Even though I’ve been on steroids for 4 weeks all 3 of my doctors are insisting on the biopsy because I’m not getting better . What was causing your flashing in your eyes?

[Pr0jection in reply to Bro-]

Glad your doctors are insisting on the biopsy and I hope you have a good outcome. With regard to the flashing images, the only thing I did immediately after I was diagnosed was to cut out all sugary foods. In an attempt to put back on all the weight I had lost before diagnosis, I had been eating far too much chocolate, ice cream, etc. One evening, just after I had eaten a Mars Bar Ice cream, the flashing images started within half an hour and lasted for about an hour. Since cutting out sugary foods, I haven't had any more flashing images. Last Friday I had a blood test to determine my glucose levels, and tomorrow I will get the results. I'm keeping my fingers crossed. I will do so for you too. All the very best. x

[Lyndaki]

I was started on 60mgs Prednisolone & had a positive biopsy for GCA as well as having PMR diagnosed. As I understand it, if you’re on steroids for longer than 2 weeks it negates any biopsy results. Within 24 hours of starting on the steroids I was feeling 100% better!

[Bro- in reply to Lyndaki]

I’m happy you you feeling 100% better! Even though I’ve been on steroids for 4 weeks all 3 of my doctors are insisting on the biopsy because I’m not responding to the steroids . I realize it can be a negative result because I’m being treated . Were you on 60mg before they did the biopsy?