Change in Diagnosis?

[Moaningxcat]

My rheumatologist called to discuss the results of my lung CT scan. She said my lungs have extensive damage and it’s very likely I have a nontuberculous mycobacterial infection. She is scheduling a pulmonologist appointment and bloodwork soon.

She does not think I have GCA even though the symptoms I presented with suggest GCA. She mentioned my interleukin 6 value is normal, biopsy negative, and my inflammation levels are good (probably because I have been prednisone…). Bloodwork showed a high value for rheumatoid arthritis, though I have no symptoms. Her assessment is that my lung damage and infection are more serious than possible GCA.

So, I am to stop the methotrexate immediately. No problem there. However, I am to be off prednisone in 10 days, dropping 5 mg every two days! I am currently at 25 mg a day. What if I do have GCA along with this lung issue? What is this quick taper going to do to me? I am interested in hearing your advice. Thanks.

[PMRpro Ambassador]

How long have you been on pred? Just looked - 6 months, Hum. Ten days is no way long enough to allow adrenal function to return after 6 months on high dose pred. That alone concerns me since you could develop quite severe adrenal insufficiency issues stopping pred that suddenly. If it were me, I would ask to reduce as she says to 5mg but also ask to go more slowly after that - depending on how you feel.

I think she could be making a few too many assumptions - of course your markers are low, you have been on high dose pred for 6 months. A negative biopsy doesn't mean it isn't GCA. That said - I'm not disputing this isn't something else and she is absolutely right to be looking for that something else. To do that she probably does need to stop the pred. The sooner she can do that, the sooner she can look for other things.

Do you know what rheumatoid markers she did? Has she done an ANCA test?

I know this is scary for you but I assume she is going to keep a close eye on you while tapering - can you contact her immediately, at least by phone? When are you to see her F2F?

[Moaningxcat in reply to PMRpro]

I really appreciate your response, as this is pretty scary. The ANCA test was negative and a ccp antibody test was done for RA. CCP antibody was 61 and normal range is 0-20. I will keep track of any symptoms as I taper and see if I can reduce a bit more slowly when I get to 5 mg. I can contact through the patient portal and she is good at responding. She wants me to have blood work in 2 weeks. Face to face appointment is December 26, but that was scheduled before she knew results of lung ct scan.

[PMRpro Ambassador in reply to Moaningxcat]

The high CCP test suggests that at some time you will develop an inflammatory arthritis - but not 100% certainty and it might take a very long time!! In 80-90% of patients with GPA (a vasculitis that involves the lungs and can resemble GCA early days) the ANCA is positive but that still leaves 1 in 5 who have GPA with a negative ANCA.

If only life was simple ...

But we are always here to have a listen and give a virtual hug except overnight in Europe - even we sleep!!

[Moaningxcat in reply to PMRpro]

I sure appreciate the virtual hugs!

[PMRpro Ambassador in reply to Moaningxcat]

We dish them out freely here 🤗

[Hidden in reply to PMRpro]

Agree. Cool and thoughtful heads are needed in this complex situation. ⛩️🤔Non TB Myco is only 'likely' so your lung specialist will organise tests to confirm ,or not, the diagnosis. Hope you get an appt asap.

[zoe69]

How long have you been on prednisolone?If you have a serious active infection it is imperative to stop immunosuppressants and prednisolone is acting like one at the moment.

But if you have been on steroids long term you should taper a bit slower when you are under 10mg.

But in your case there's an urgency to get you off. Write down symptoms that occur during tapering and if they insist let your doctor know.

If you have GCA it is possible that you will flare up, but as your doctor said they have to treat the infection first.

[Moaningxcat in reply to zoe69]

Thank you for your response, zoe69. I will be asking the rheumatologist if I can taper a bit more slowly as I get to 5 or 10 mg. Good idea to write down symptoms as I taper.

[Hidden in reply to zoe69]

A propos your last sentence, lots of folks on the forum have been treated with antibiotics for significant infections without being told to stop their steroids.......wouldnt make any sense for them to have to do so (e.g. especially given the risk of blindness of a GCA flare) Ditto folks on mega immunosuppressants such as organ transplants etcetera.

[zoe69 in reply to Hidden]

I have too, but it depends on the infection and the average time of healing. TB myco usually needs a cocktail of antibiotics and it can take up to a year to heal. Steroids, but lower than 20mg ( 20mg they are an immunosuppressant as well as anti-inflammatory) can be given, but as steroids can affect test results many doctors want their patients to be below 5mg.

Complicated and I think it depends on the level of knowledge the clinician has.

[Moaningxcat in reply to Hidden]

I asked rheumatologist if I could be on steroids and antibiotics. It was a no go with her. I’ll try to taper to 10 mg and then discuss going more slowly. Thank you for replying!

[PMRpro Ambassador in reply to Moaningxcat]

I'd be inclined to discuss it with a pulmonologist - because I bet they use steroids and abx together quite often.

[Moaningxcat in reply to PMRpro]

Good advice. Hopefully, I get appointment soon.

[PMRpro Ambassador in reply to zoe69]

Most of us on this forum have been on pred for a long time and if you look at earlier replies in the thread you would have seen Moaningxcat has been on very high doses for GCA for 6 months. That means total discontinuation of pred in a short time is not an option because of potential adrenal suppression. In fact these day pred and abx are often prescribed together in pulmonary infections - though normally only a short course of course. But there is a role for corticosteroids in severe infections.

[zoe69 in reply to PMRpro]

I was the first to reply so I wouldn't be able to have seen the replies, but I assumed that it could be the case except if it was a very recent diagnosis.I very well know the difficult journey GCA patients have. It is the most common vasculitis and the one with a lot of relapses.

Hope you are keeping well 😊

[PMRpro Ambassador in reply to zoe69]

I was actually the first to reply by the order the replies appear!! However, we were probably writing at the same time since I see both replies say 10 hours. But I'd looked back at the profile page and past posts to see how long since the rheumy has suggested such a precipitate reduction - off pred in 10 days after 6 months at high doses is crackers - don't think I have ever heard that fast before!!!

I'm sure I'd be doing better if the weather was more like a decent October than April crossed with a monsoon!!!!

[zoe69 in reply to PMRpro]

The weather is just crazy!I didn't check the pat posts, I did reply while I was out.

I have seen tapering so fast before, but only twice. One was from 40mg...

Both with possible TB. Both had TB at the end and one was treated with two antibiotics+5mg steroids and the other had 3 antibiotics, no steroids.

I never like when patients taper fast, slow and steady is my personal opinion

[PMRpro Ambassador in reply to zoe69]

Same here - and the lower the slower! Do what you like down to 5mg - but a longterm pred patient can't risk zero like that!

I missed out on summer altogether! I was in Scotland most of July and August, we got one decent day at a time, otherwise it was windy and often wet, I got back here on the 11th September and it snowed up the mountain on the 13th. And hasn't really recovered since. Sick of it!

[DorsetLady PMRGCAuk volunteer in reply to zoe69]

I very well know the difficult journey GCA patients have.

Knowing about it and living it is not the same, and no-one living it would suggest stopping Pred as you have. We are all too aware that may result in a flare which could lead to sight loss.

[Moaningxcat in reply to DorsetLady]

This is why I am so fearful, DorsetLady…. I’ll do the best I can to taper quickly to 10 mg and then consult for a slower taper. I mentioned adrenal insufficiency to rheumatologist when she was telling me about this fast taper. She wasn’t concerned and said adrenals should wake up. I didn’t want to offer any opposition at the time…I don’t think anyone who hasn’t lived with this can understand what it’s like. That’s why this forum is a god-send!

[DorsetLady PMRGCAuk volunteer in reply to Moaningxcat]

She wasn’t concerned and said adrenals should wake up.

Should wake up? Yes they most likely will… but not overnight… very cavalier approach!

[Moaningxcat in reply to DorsetLady]

I thought so too! Should doesn’t mean they will, unfortunately.

[PMRpro Ambassador in reply to Moaningxcat]

They SHOULD wake up possibly but we know from a study done in Leeds UK that it takes a LOT longer than most rheumies and even endos think! And even prior to that study, they expected it in a few MONTHS, not a few days as she is allowing. An adrenal crisis can make you very ill and can be life threatening if not caught very quickly.

[Moaningxcat in reply to PMRpro]

Good info to have, PMRPro. Based on what everyone has written, I don’t plan on getting to zero in 10 days. I’ll get to 10, if possible, and then go slow. I appreciate your expertise, experience, and advice!

[Moaningxcat in reply to zoe69]

It is quite a journey! I appreciate your replies and encouragement!

[Nextoneplease]

I’m so sorry to hear this moaningxcat x

I can’t add to what previous posters have said re prednisolone. I agree this is a case in which to follow medical advice, while of course keeping the doctors fully informed about how pred reduction and everything else is affecting you.

Not the same thing, but I had a bad case of endocarditis a few years back, was in hospital for months on IV antibiotics and then continued for six months at home. My point being that the right antibiotics did the job . So please don’t lose heart, work with your doctors and chin up!

With hugs and best wishes 🤗🤗 xx

[Moaningxcat]

Thank you for the encouragement! I sure hope I can get the right antibiotics to get rid of this lung infection. It’s been going on for quite a while. I’m happy to hear that your endocarditis treatment was successful. Sounds like it was a long ordeal for you.

[Nextoneplease in reply to Moaningxcat]

Thank you😊Yes it was long but I had an excellent cardiologist and he helped me to keep the faith! Good luck, sending you hugs 🤗🤗xx

[Moaningxcat in reply to Nextoneplease]

Hugs back to you🤗!

[Nap1]

I would not reduce so quickly. Whether you have GCA or not you do have to think about your adrenal glands. Also, if you have an autoimmune disease reducing so quickly is not a good thing to do in my humble opinion. I’m sure you will get comments from people much wiser than myself.

[Moaningxcat in reply to Nap1]

I agree with you! I’m not going to taper that quickly. My rheumatologist wasn’t happy when I voiced opposition to the fast taper. Thank you for replying.