Starting treatment today and having a bit of anxiety about it

[Susan55]

Hello Everyone

Hope everyone is doing well. I went for my second appointment yesterday with Rheumy. We went over final CT Scan and blood work results with another full exam. I am starting Methotrexate and folic acid today and continuing on with the Prednisone. Having anxiety about taking the medications (all new to me) what to expect (side effects) will I be OK alone etc. I am probably worrying too much but hoping this is all normal feeling what I am feeling. The unknown
I received an email from the Vasculitis Foundation of Canada yesterday and they showed me the list of doctor's to see in Vancouver from their web site and I was shocked to see that my Rheumy is on the list. So, I believe I am in good hands with her treatment options.
I got a standing order for monthly blood work, monthly doctor's appointment's all put in place to see her for the next 6 months etc.
She said my nerves, ears, eyes, muscle weakness have been effected by GPA. So hoping the methotrexate will help soon and hoping not too many side effects.
Still having a hard time believing I have this and just can't seem to wrap my head around it. One min it feels real then it doesn't. I guess it just takes time for it to feel real and be able to accept it and move forward. I am doing lot's of reading and learning as much as I can to stay strong and positive like all of you on the site.
I am so inspired reading all the post on here which is giving me hope.

Just wanted to say thank to everyone here for your all your support and feedback..so glad I found all of you! My new family

[Pete]

Hi Susan,

Just take a deep breath and just breathe. It's gonna be ok. Most of us who have taken methotrexate have noted some fatigue for 24-48 hours after taking it. It helps to split the dose (half at breakfast and half at supper). The folic acid is to minimize the hair loss that methotrexate can cause.

The labs and follow ups are pretty standard for new weggies. Just keep communicating if you have any odd symptoms and doing what your doc orders.

I've been able to manage the disease pretty well by sticking to the affirmations in my signature. I'm sure you'll be fine in due time.

[Susan55]

I mananged to calm my self down and breathe Thank you Pete

Hi Susan,

Just take a deep breath and just breathe. It's gonna be ok. Most of us who have taken methotrexate have noted some fatigue for 24-48 hours after taking it. It helps to split the dose (half at breakfast and half at supper). The folic acid is to minimize the hair loss that methotrexate can cause.

The labs and follow ups are pretty standard for new weggies. Just keep communicating if you have any odd symptoms and doing what your doc orders.

I've been able to manage the disease pretty well by sticking to the affirmations in my signature. I'm sure you'll be fine in due time.

[elephant]

I went through the same thing, all the unknowns can be so overwhelming. Hoping the medicine works soon. One day at a time. It's a tough disease but us weggies are tough��

[Alias]

I think what you are feeling is completely understandable and normal, and familiar to most everyone on this forum. Suddenly being diagnosed with a chronic illness is pretty mind-blowing for sure. Most people tolerate MTX pretty well. I think the idea is that now that the prednisone has tamped down the inflammation, the MTX can induce remission of the disease. Sounds like you are in good hands with someone who is following the standard protocol for treatment, and is monitoring you closely. In addition to minimizing hair thinning, I believe the folic acid is meant to offset toxic effects of the MTX. In my case, my liver enzymes reacted strongly enough that the doc switched me from folic acid to a drug called leucovorin to be taken in conjunction with MTX. Your labs will tell the story of how you are reacting and what adjustments might need to be made. Again, sounds like you are on a good track. Hang in there!

[Middlesista]

Dividing the dose of MTX was helpful to reduce fatigue - good advice

[LisaT]

Susan, I'm glad you've found a good doctor and are in good hands. Accepting and coming to terms with your illness will take some time. It will be easier to accept when your symptoms are under control and you know the disease is no longer progressing or doing any potentially permanent damage. Take it one day at a time, be easy on yourself and focus on healing. Also, keep in mind that there are may other medication options. If MTX doesn't sit well with you, call your doc sooner and don't wait a month. Many people are fine on it. I couldn't take it because it made me too nauseous to function. I wa ssomewhat surprised your doc didn't start you right away on Rituximab to induce remission (did it come up at all?), but it may be that regardless of the disease affecting your eyes and ears you can only get RTX if the others don't work. Did your doc say how badly or to what extent they have been affected?

It took me two years of asking and going back to the rheumy, and my nose and throat acting up and inflamed despite the other medication combinations. From everything I've read here and elsewhere, RTX has the most good outcomes with the fewest side effects, so you may want to mention it early on and ask for it if the MtX isn't perfect for you.

I'm finally starting to get some energy and will get in touch about meeting for coffee soon. Take good care and it is totally normal to be in a bit of shock amd to grieve on and off. It will slowly sink in a little bit at a time. Hope you start feeling better asap!

[Jaha]

Susan,
I am wishing you all the best with your treatments. I'm glad that you are reading and learning all that you can about Wegs. It really helps to have the support of this wonderful group. Please keep us informed on what is going on with you.

[Susan55]

Hi Lisa
Sorry I haven't been around for a bit. I think I am in good hands. But just so many more questions and Rheumy is going away next month for 1 month. I don't have anyone to call if symptoms get worse, so I will be calling her office on Monday to ask.
She gave me an standing order for blood work but I noticed she is not checking ANCA/? Shouldn't this be done monthly? I saw my lung dr yesterday and she was in total shock that his dr has NOT sent her anything stating I have GPA. So, I was prepared and had my file folder I started with all blood work , medications etc. She took copies of all of it for her files. She thinks I should be going to the vasculitis clinic in Vancovuer, so she said she will see what she can do to get me in there . I did ask my Rheumy about it last week and she said I didn't need to go there. Then the Rheumy asked if I had medical coverage for physio and I said no I pay a fee to go, she then said then forget it. Well I told my Lung Dr this and she said you have a neurologist then why are you not going there to see her? OMG
So, what I am trying to say is this Rheumy has NOT told any of my other dr's what I have and what medications I am taking..so I have some leg work to do next week and get on top of this now.
No she never mentioned Rituximab as an option, she said if MTX doesn't work she is going to give me cyclophosphamide. I want to go to the Vancouver clinic to see what they say and get a second opinion. Finger's crossed my Lung dr can get me in, if not I am going to my family dr to be referred.

I have been doing some cooking and making larger amounts like you said and freezing them, so when I don't feel so well it's so much easier.

I'm so glad to hear your doing better and hope we can meet for coffee soon. It would be so nice to actually meet someone face to face (well for me, lol) to make it all real and know I am going to be ok...hugs Lisa

Susan, I'm glad you've found a good doctor and are in good hands. Accepting and coming to terms with your illness will take some time. It will be easier to accept when your symptoms are under control and you know the disease is no longer progressing or doing any potentially permanent damage. Take it one day at a time, be easy on yourself and focus on healing. Also, keep in mind that there are may other medication options. If MTX doesn't sit well with you, call your doc sooner and don't wait a month. Many people are fine on it. I couldn't take it because it made me too nauseous to function. I wa ssomewhat surprised your doc didn't start you right away on Rituximab to induce remission (did it come up at all?), but it may be that regardless of the disease affecting your eyes and ears you can only get RTX if the others don't work. Did your doc say how badly or to what extent they have been affected?

It took me two years of asking and going back to the rheumy, and my nose and throat acting up and inflamed despite the other medication combinations. From everything I've read here and elsewhere, RTX has the most good outcomes with the fewest side effects, so you may want to mention it early on and ask for it if the MtX isn't perfect for you.

I'm finally starting to get some energy and will get in touch about meeting for coffee soon. Take good care and it is totally normal to be in a bit of shock amd to grieve on and off. It will slowly sink in a little bit at a time. Hope you start feeling better asap!

Vasculitis

[Susan55]

That's what the doctor ordered...one dose in the am and other in the PM and slept longer then 2 hrs which was nice it took three days for the fatigue to go away. Hoping next week it won't last as long the fatigue. The trick I guess is don't fight the fatigue just go with the flow

Dividing the dose of MTX was helpful to reduce fatigue - good advice