Thanks for letting me join this forum

[Nat Beaudette]

Hello everyone. I'm 48 and I was diagnosed with GPA 2 weeks ago. It affects my trachea (I have subglottic stenosis), sinuses, and I do have some very minor eye, ear and mouth involvement. It took about 16 months of feeling progressively sick to my diagnosis in Toronto at Mt Sinai Vasculitis clinic. I consider myself very fortunate that so far, my GPA is limited. I have been on 30 mg of prednisone and 20 mg of methotrexate for the last 11 days. Is it normal to have a chronic sore throat, heart palpitations and lymph node pain/swelling with the meds? These symptoms are new since I've started treatment. So happy to have found this group and I look forward to do a lot of reading!

[Dirty Don]

Welcome Nat...lots of info for you to digest here. Most is experiential...but it seems that's the info we need most as the docs take care of the meds. I had a lot of sinus damage & lung, lots of mucous whether I wanted it or not. That caused extreme coughing, a bit of sore throat, and I seemed to (still do) hear the 'ocean' all the time. Some symptoms are simply the start of change in your body...as the meds take hold, the body reacts. Hang tough, ask lots of questions...best to you.

[annekat]

Hello everyone. I'm 48 and I was diagnosed with GPA 2 weeks ago. It affects my trachea (I have subglottic stenosis), sinuses, and I do have some very minor eye, ear and mouth involvement. It took about 16 months of feeling progressively sick to my diagnosis in Toronto at Mt Sinai Vasculitis clinic. I consider myself very fortunate that so far, my GPA is limited. I have been on 30 mg of prednisone and 20 mg of methotrexate for the last 11 days. Is it normal to have a chronic sore throat, heart palpitations and lymph node pain/swelling with the meds? These symptoms are new since I've started treatment. So happy to have found this group and I look forward to do a lot of reading!
Welcome to the forum, Nat. I'm glad you found us. I'm glad your GPA is so far limited and was caught when it was, although earlier would have been better. Many of us have waited longer for a diagnosis. I'm not sure if your issues are from the disease or the meds. I'd suspect the MTX in the case of the heart palpitations, or could be the pred, as it gets us a little hopped up. But that is not a very high initial dose of pred, while your MTX dose is more standard, depending on your body weight, and is more than I've ever taken, so may take some getting used too. You could try splitting the dose and taking half before bed and the rest during the day. I've had a few heart palpitations and am not sure of the cause. I did have lymph swelling at the beginning and it went away with treatment. Sore throat could easily be attributed to post nasal drip from your sinuses. Daily sinus rinsing with a neti pot or squeeze bottle, available at pharmacies, will help with that. Others will have more suggestions. Best of luck, and keep us posted.

[Vansyckle73]

Welcome!


Sent from my iPhone using Tapatalk Pro

[vdub]

Is it normal to have a chronic sore throat, heart palpitations and lymph node pain/swelling with the meds?
I've been on 20mg MTX for about 5 years now. The amount of pred I take has varied considerably, but is currently just 2mg/day. I'm also on about 18 other drugs. I have never had the type of side-effects you are having. I would certainly run it past your doctor. It could be nothing more than a winter cold. Just because you have wegs, doesn't mean you can't get all the other stuff that we normally get in the winter. Be sure and get your flu shot (its still not too late) and, if you are the proper age, get a shingles shot, too.

[Alias]

Nat, I have had intermittent axillary node swelling since being on MTX. No official explanation, but it may be some kind of sensitivity due to being immune suppressed. My initial dose of prednisone was 60 mg per day, and I had all kinds of side effects. Mostly I did not worry about them because the overall effect was to make me feel much better as it dampened the inflammation of GPA. They mostly subsided as the prednisone dose was tapered. I also have "limited" GPA and was diagnosed relatively early, as you were. I experienced a pretty quick drug remission with the MTX and tapering dose of prednisone. Sounds like you have access to good treatment and that you're on a good track. Best wishes.

[Nat Beaudette]

Nat, I have had intermittent axillary node swelling since being on MTX. No official explanation, but it may be some kind of sensitivity due to being immune suppressed. My initial dose of prednisone was 60 mg per day, and I had all kinds of side effects. Mostly I did not worry about them because the overall effect was to make me feel much better as it dampened the inflammation of GPA. They mostly subsided as the prednisone dose was tapered. I also have "limited" GPA and was diagnosed relatively early, as you were. I experienced a pretty quick drug remission with the MTX and tapering dose of prednisone. Sounds like you have access to good treatment and that you're on a good track. Best wishes.

Thanks for your reply. It gives me hope. I do feel overall better with the meds. May I ask how long your treatment was and how long you've been in remission?


Sent from my iPad using Tapatalk

[Alias]

Sure. I continue with MTX treatment, so my remission is not "drug free." (I'm told I should continue with a maintenance dose for as long as I can safely tolerate it.) Looking back on notes and emails it seems I was back on track to more or less normal functioning after about three months, and there was significant improvement after that as well. The early weeks of prednisone treatment were not fun, that's for sure, but the relief from the worst symptoms of GPA was great. I was diagnosed in early 2014, so I have been in a solid remission for over two years... again, with maintenance meds. I am certainly not symptom free, but there is no sign of disease activity according to my periodic labs.

I do not have SGS, which presents its own set of challenges, I think, but again it sounds like you are in good hands with a group of specialists there.

Please do not hesitate to ask questions or share your experience as your treatment moves forward.

[Gab122]

Hi Nat Beaudette - welcome! I'm relatively newly dx too. (8/1/16). I started having symptoms about 5/1/16 In my ears (pain, pressure and eventually drainage) I had high anca tests and they used ct scan to see granulomas in my lungs. I was put on 60 mg pred for 6 weeks then 40 mg and then a slow taper to 20. I'm still at that dose now. I also had two Rituximab infusions in Aug and have my 3rd mid December. My ear pain and drainage stopped the first 2 weeks of Aug I believe, but I'm left with a weird sensation. My lung granulomas are almost gone per a follow up ct scan. I still get fatigued easily and a bit short of breath. It could be the meds causing some of that.
I'm on bactrim to help fight potential lung infections. I'm also on Prilosec to protect my stomach (due to pred risks) and fosamax and calcium / Vit D (again thx to pred causing bone problems) and ambien (again thk you pred) you might want to discuss these extra meds with your dr since you are on prednisone.
I'm 50 in Jan so we are a similar age. I found the first month or two a whirlwind of Dr appts and lots of reading up on this disease. Next the reality started settling in. Not fun. A bit depressing. But I'm turning the corner and am very grateful for all the people here.
Come with any and all questions. It's a great group. Where are you from? I'm in NH and get treated in Boston.
Wishing you health!
Gabrielle

[Nat Beaudette]

Hi Nat Beaudette - welcome! I'm relatively newly dx too. (8/1/16). I started having symptoms about 5/1/16 In my ears (pain, pressure and eventually drainage) I had high anca tests and they used ct scan to see granulomas in my lungs. I was put on 60 mg pred for 6 weeks then 40 mg and then a slow taper to 20. I'm still at that dose now. I also had two Rituximab infusions in Aug and have my 3rd mid December. My ear pain and drainage stopped the first 2 weeks of Aug I believe, but I'm left with a weird sensation. My lung granulomas are almost gone per a follow up ct scan. I still get fatigued easily and a bit short of breath. It could be the meds causing some of that.
I'm on bactrim to help fight potential lung infections. I'm also on Prilosec to protect my stomach (due to pred risks) and fosamax and calcium / Vit D (again thx to pred causing bone problems) and ambien (again thk you pred) you might want to discuss these extra meds with your dr since you are on prednisone.
I'm 50 in Jan so we are a similar age. I found the first month or two a whirlwind of Dr appts and lots of reading up on this disease. Next the reality started settling in. Not fun. A bit depressing. But I'm turning the corner and am very grateful for all the people here.
Come with any and all questions. It's a great group. Where are you from? I'm in NH and get treated in Boston.
Wishing you health!
Gabrielle

Thanks for your input. I will speak to my doctor about the stomach medication as this is definitely more of an issue now. I live in Sudbury Ontario, a 3.5 hour drive north of Toronto where I am treated. I do feel better on the prednisone and methotrexate but I still have bloody sputum and some minor symptoms to one eye and ear (leaky/irritated eye, redness, swollen outside of ear). This is definitely more manageable than it was though. I am being referred to an ENT for my trachea issues. I'm just so thankful that it was caught relatively early; I can work part-time and still enjoy a quality of life. I never thought I'd say this but this disease has given me a valuable life lesson....To learn to take care of myself. I was never good at that as my work was my life. I'm grateful for it.


Sent from my iPad using Tapatalk

[Alias]

I have never been one to look for "silver linings" in terrible events. Far too cynical and pessimistic by nature for that. However, dealing with this diagnosis has resulted in a major rearrangement of priorities in my life, and that has been a good thing.

I hope that other members who have dealt with trachea issues will touch base to share experiences with you. I understand that it can be a difficult and often recurring problem.

No doubt you have already looked at various resources on the web. The Vasculitis Foundation has a series of videos on YouTube that I found quite helpful. There is also a free book with basic information from VF that you can order by emailing Joyce Kullman with VF.

[Jaha]

I'm wishingyou all the best for feeling much better soon. Welcome to the best group ever, somebody is usually always here to answer any questions you might have. Take good care of youself!