Prednisone required? And new "symptom"(?) - light sensitivity

[Skempins]

Hi everyone,

My symptoms that lead to my diagnosis were bad breathing (turns out i had a granuloma in my bronchus tube, right where the trachea splits off), pain and swelling in my hands, pain in my joints, nosebleeds, and tingling in my toes sometimes, although I can't tell if that was related to the GPA or not. It's almost been a year since I was diagnosed.

My rheumy allowed me to go lower on my methotrexate when I was feeling better months back (feeling better symptom-wise, but was having terrible muscle pain and nausea, so I thought it might be the methotrexate). I was already weaned off of prednisone at the time. Going lower in my dose helped with the nausea a lot at least. Not the muscle pain, as far as I can tell.

I went to my rheumy a month ago and was having worse breathing, more pain in my joints and hands, sinus pain and some nose bleeds again. He and his fellows decided I should go back up to my original dose of methotrexate again (along with vitamin A, in hopes of reducing the nausea I had last time), go for a pulmonary function test, and to go back on prednisone. My rheumy asked me to email him right after getting my PF test done (I had originally had it done at the hospital in my home town, so he decided I should do it there), and he'd let me know when to go back on prednisone. I think this was in case the tests didn't show anything or I needed more tests.

Well, I had the tests done over a week ago, and the results are still not reported, according to my rheumy's office! So I haven't heard from my rheumatologist as to when to begin the prednisone.

So, a couple of things...

My rheumy has specialized in Wegs, written lots of medical articles, things like that, so I trust him, but I do find it difficult to get a hold of him sometimes because he's such a busy doctor in a big hospital.




Just a note that the vitamin A has really helped. I take it a few days before and after methotrexate.




I've gone over a month without the pred. My hands are hurting still, my breathing's still not awesome, my nose hurts often, and now I'm also sensitive to light, which has me a bit concerned. I have been taking work off quite a bit because if I focus too much or get stressed, I feel unwell. I have an awesome manager who reduced my workload, so that's helped, too.




But, do I really need the prednisone? I didn't love it last time (who does?) and have increased my methotrexate. But, I don't want to go without it in case the disease is sneak-attacking me, making things worse without me realizing. On the other hand, maybe I'm just a hypochondriac... I saw my Optometrist yesterday who said my eyes look normal. But what if light sensitivity is a warning sign and you can't see anything yet?



If anybody has experience with light sensitivity or has advice regarding whether I should be on the prednisone or not, please let me know! Regardless, I'll wait until my rheumy gets back to me I think to hear his advice.

Also, does everyone need their ANCA level tested again, or only during diagnosis? I've only had it done once.

THANK YOU!

[ST316]

Hi,

I was just diagnosed this past March, so I do not have much experience with this yet. But I do know that I was told I needed to see an Ophthalmologist to obtain the necessary testing that needed to be done to check for Uveitis, Schleritis, inflammation of the optic nerve etc. Was your Optometrist equipped to check for this? If not, it might be something to consider.
Hope they can give you something to ease your symptoms soon.

Best,
Susan

[Skempins]

Hi,

I was just diagnosed this past March, so I do not have much experience with this yet. But I do know that I was told I needed to see an Ophthalmologist to obtain the necessary testing that needed to be done to check for Uveitis, Schleritis, inflammation of the optic nerve etc. Was your Optometrist equipped to check for this? If not, it might be something to consider.
Hope they can give you something to ease your symptoms soon.

Best,
Susan

Thanks for the reply, Susan! To be honest, I'm not too sure! I went to her because she was recommended to me by someone who says she's great. I just assumed she would be equipped for everything. But she was very quick at our appointment. Very frustrating having a disease that not a lot of people understand (even my family doctor doesn't know much about it and is quite upfront about that). Even more frustrating being moved out of the appointment so quickly when I have real concerns. And then being charged $100!

Best of luck with your diagnosis, too. I know what you mean about being a newbie when it comes to the diagnosis - it's difficult to know what's normal and what's not!

[Middlesista]

Hi Skempins - As far as the ANCA is concerned I have had mine checked a few times and was diagnosed last November. Are they checking your inflammatory markets - CRP and Sed Rate?

Your symptoms do need to be addressed to find out what is going on. It is great that you have a knowledgable doc but not helpful if you can not get in touch with him when u need to. Also many hospitals and medical practices have an online portal that allows pts to view labs and X-rays - maybe this is something to look into?

Susan is correct about seeing a good opthamologist - in fact one of the main reasons I was diagnosed was because of the eye doc I saw due to visual problems I was having

Please pursever to get the answers you need. Take care

[Skempins]

Hi Skempins - As far as the ANCA is concerned I have had mine checked a few times and was diagnosed last November. Are they checking your inflammatory markets - CRP and Sed Rate?

Your symptoms do need to be addressed to find out what is going on. It is great that you have a knowledgable doc but not helpful if you can not get in touch with him when u need to. Also many hospitals and medical practices have an online portal that allows pts to view labs and X-rays - maybe this is something to look into?

Susan is correct about seeing a good opthamologist - in fact one of the main reasons I was diagnosed was because of the eye doc I saw due to visual problems I was having

Please pursever to get the answers you need. Take care

Thanks for the reply!

I spoke with my doctor this afternoon. Very relieved. He wants to see me this month and I'm going back on prednisone.

I asked about the ANCA and he said I don't need to get it tested regularly. Not sure why! But I've heard the doctors usually go by signs and symptoms rather than the tests, although I do get my blood and urine tested monthly. Also, last time I saw my rheumatologist, he said this treatment is sometimes more like an art than a science. I really trust him. I heard he's one of the top Wegs specialists in Canada.

I really like the idea of an online portal to check test results! I've found it's been rather frustrating to learn about my results. I get my blood tested in my hometown each month and sometimes when I go see my doctor, she says they didn't run the test! It's shocking. I've had to tell them how important it is that the results are sent to my doctors. That shouldn't need to be said!

I'm going to ask my doctor to refer me to an eye specialist who can run the right tests. I told my rheumatologist on the phone that my eyes have been burning. It's my left one in particular. I have to wear sunglasses inside a lot. Also, my fatigue has been bad. Hopefully I see a difference when I begin prednisone!

Thank you both for your help.

[Gab122]

Hi Skempins sorry you have joined this Weg club. But if we all have to have it, at least we can learn from each other.

I saw an opthamologist in Boston who has other Weg patients. When you schedule with an eye doctor, ask if he/she has other Weg GPA patients.

Also, my understanding is that ANCA scores do not necessarily go down even in remission and do not necessarily go up with disease activity. So they are not really useful for detecting Weg activity. I also, like you, was told that symptoms are more indicative of activity and checks of sed rate, c-rp, CBC, metabolic panel and urinalysis are helpful too.

This is a great forum to ask questions and get support. Wishing you the best!
Gabrielle
PS - prednisone can cause eye pressure increases - something to have checked if you are on high pred for a while. If eye pressure is high, you may be prescribed eye drops.

[melbourne andy]

hi Skempins
I would recommend you go and see a good eye doctor ASAP, it sounds a lot like scleritis, I was diagnosed with this nearly 2 years ago, it got that bad it put me in hospital for 2 weeks, I still suffer with it today and I see the eye doctor every month.
please do not take this lightly as it can seriously damage your eyes and the pain and sensitivity only get worse, trust me.
when you do go and see them make sure you mention scleritis, when I first went they tried treating me with eye drops but these just made it worse as they were not strong enough, eventually I had to have a ketamine infusion and was on high doses of pred for about 12 months to get on top of it.
good luck
Andy

[Skempins]

Thank you Gab122 . I'll definitely ask that. I really appreciate the advice.

[Skempins]

hi Skempins
I would recommend you go and see a good eye doctor ASAP, it sounds a lot like scleritis, I was diagnosed with this nearly 2 years ago, it got that bad it put me in hospital for 2 weeks, I still suffer with it today and I see the eye doctor every month.
please do not take this lightly as it can seriously damage your eyes and the pain and sensitivity only get worse, trust me.
when you do go and see them make sure you mention scleritis, when I first went they tried treating me with eye drops but these just made it worse as they were not strong enough, eventually I had to have a ketamine infusion and was on high doses of pred for about 12 months to get on top of it.
good luck
Andy

Thank you, Andy. I can tell this is not something I should leave alone. I booked an appointment today with an optometrist based on your advice. Unfortunately, I have to pay for that appointment so they can (hopefully) refer me to an ophthalmologist - it seems as if that's who I'm supposed to see about this?

Wishing you luck, and thank you for your help. I wish you didn't find this out the hard way and am grateful for others looking out for me. Sometimes it seems like the symptoms are the same and then something changes really quick and can be very dangerous.

[Alias]

I think it's correct that ANCA is not something that needs to be checked after you have been diagnosed. A positive ANCA is helpful in diagnosis, but ongoing monitoring is not necessarily going to be helpful in assessing disease activity. Usually the labs for monitoring are CRP, ESR, CBC, and CMP, and a UA if there is any indication of kidney involvement.

I have not had eye involvement, fortunately, so I did not have an opthalmologist check me out in connection with my diagnosis. However, I recently saw an optometrist for a long overdue eye exam. I indicated on my pre-appointment paperwork that I have GPA. I ended up waiting quite a while in the exam room. Initially I was annoyed, but later I was impressed, because it turned out she was late because she was doing research on GPA. She gave me some info on the potential effects of GPA on vision, and the potential side effects of methotrexate on vision. If you have eye symptoms that are new, you might consider self referral to an opthalmologist rather than waiting for a month.

[drz]

Any eye symptoms should be taken seriously and checked out ASAP. I remember at my first followup session after eventual release from hospitals, my GPA treating physician said to me. Find an eye doctor who will see you immediately if you have any new visual symptoms. You lost your hearing to Wegs so lets try save your vision.

I may be a minority but happen to be one of the lucky ??? ones whose ANCA scores do seem to track my Weg activity. It helps the doctors sort out the degree of severity of any increase in inflammation markers and my residual symptoms brought on by infections and my normal fluctuations with this disease. I don't get the ANCA labs done very often like my other routine labs but it is usually done when the inflammation markers have increased along with residual symptoms.

[vdub]

Do you mean a "light sensitivity" as in easily sunburned or you like a darkened room? I noticed during the early years that I preferred a darkened room. No one ever knew for sure if I was in my office because I always had the lights off. I'm not that way so much anymore, but I have no idea what made the change.

As far as you busy rheumy.... I had the same situation. When I was first dx'ed, my rheumy was a noted specialist for vasc AI's and was very busy. Not to mention he was several hundred miles away. After he got me stabilised, I told him I was going to switch to a local rheumy for maintenance and go to him if things started getting rough. That left him open to concentrate on new people who needed his talents worse than I did. I continued to see him about once a year for a couple years and then quit altogether. I know if things went south, he'd see me right away, but I haven't needed it. My local rheumy has been quite satisfactory.

MTX is probably what is causing your discomfort. You mentioned taking Vit A, but are you also taking folic acid? Generally, 1mg to 2mg of folic acid daily except on mtx days will be rx'ed. The folic will make you feel better since the mtx depletes you folic acid levels.

Generally speaking, 20mg/weekly of mtx is reasonably tolerable without many side effects. If you are taking anything above that level, then you might feel poorly for a couple days after taking it. Everybody is different of course.

As for pred.... Pred makes you act poorly and look poorly, but I don't know of any side effect that makes you feel poorly. Its actually just the opposite. You should feel pretty fantastic when on pred. Of course, everything varies depending on the level of pred you are on.

Remember -- none of us are doctors.