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.

[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.

[Alysia]

Hi Sue,

I am glad that you started your treatment and that you have a good wg dr. It takes few weeks for mtx to start working. I think that you shouldnt take the folic acid at the same times as the mtx (not sure, I was on it years ago, cant remember).

It also takes time to adjust to the idea of being sick with WG. I have found this group only after few years of being a lonely weggie. It makes a huge difference to belong to our weggie family here, with friends who understand how I feel, who care and support. I could have never make it without my wg family here ❤❤❤

[Susan55]

For me all the unknowns are the worst thing. I want answers (haven't been given much information yet) just what I am reading on here from the many post and learning so so much. AND just how positive all the weggies are..hugs to all of you!
exactly one day at a 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.

[Susan55]

Yes, being able to wrap my head around this diagnosis is hard for me, but it's getting better day by day. I did good on my first treatment of MTX, very tired but when I keep reading how it helps along with the folic acid and steroids...lets do it and get this into remission :) I've become so much stronger in the last couple of days. Had to teach my self how to sit down, clear my head and breath..it really helped. I find having music on relieves lots of anxiety for me and my head from spinning.
I also find eating small amount of food and eat every two hours my stomach is not as upset..so all baby steps to learn what my body needs and listen to my body.

Thank you :)



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!

[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

[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

[elephant]

So glad you are staying on top of this, hope you can get the rituxan.

[Susan55]

So glad you are staying on top of this, hope you can get the rituxan.
Fingers crossed I can get in to see Rheumy before the next three weeks. That's when my next appointment is. I've been having for weeks now, lots of throbbing in left side of chest area. They say my lungs sound good. Saw my lung Dr. on Friday and she said my lungs sound good. BUT the pain is very bad, comes and goes and the last 5 days it feels as if my throat is closing :(..a bit scary...this also comes and goes. When this happen's at times I see stars all around me. Not enough oxygen? OH I don't know..but they need to figure out what is causing this, very unpleasant and hurts.
I do have mild COPD and I think it's an infection of some kind but the doctor's don't seem concerned. I think I may need a stronger medication like rituxan and see how I do on that. Hoping for some answer's this week

[vdub]

You should be feeling a little better by now. That is, not feeling the effects of the mtx so much. The folic acid doesn't do much for you -- its only a replacement for the folic acid that the mtx tends to deplete. Its a rather mundane drug, but still necessary. I hope you are doing a lot better.

I was in your area a couple weeks ago. The Canadian gov't was nice enough to give me a NEXUS card, but I had to go to Blaine for an interview first. After the interview, we drove to Pt Roberts just to see that unique part of the US. Hardly seems worth the effort to keep it. Maybe we could make a deal like if Canada takes Seattle, we'll give you Pt Roberts, too? That would be a heck of a deal for the US. We could even throw in Portland if you like. :-)

[Alias]

Susan, my understanding is that ANCA is a diagnostic indicator in most patients, but not in indicator of disease severity. It's not included in my regular labs.

[Susan55]

You should be feeling a little better by now. That is, not feeling the effects of the mtx so much. The folic acid doesn't do much for you -- its only a replacement for the folic acid that the mtx tends to deplete. Its a rather mundane drug, but still necessary. I hope you are doing a lot better.

I was in your area a couple weeks ago. The Canadian gov't was nice enough to give me a NEXUS card, but I had to go to Blaine for an interview first. After the interview, we drove to Pt Roberts just to see that unique part of the US. Hardly seems worth the effort to keep it. Maybe we could make a deal like if Canada takes Seattle, we'll give you Pt Roberts, too? That would be a heck of a deal for the US. We could even throw in Portland if you like. :-)
How did the interview go? I've heard it's hard to get a Nexus pass from so many people, so your one of the lucky one's :) When I first moved to Canada from California in 78 I loved going to Pt Roberts just for the drive. Sure we will take Seattle and you can have Pt. Roberts.
Next time your in the area let me know and maybe we can go for coffee. Good luck for the job :)

[marta]

For me all the unknowns are the worst thing. I want answers (haven't been given much information yet) just what I am reading on here from the many post and learning so so much. AND just how positive all the weggies are..hugs to all of you!
exactly one day at a time!

I just sent you a couple of PM's but wanted to say that the unknown is the worst part of the disease. That's why I think it's so good to know as much as possible, then you slowly eliminate the unknowns (well not all of them because that's the magical thing about life - the unknown) but all the unknowns when it comes to how this disease operates and how you can squash it.

Some people go with the 'ignorance is bliss' ideology, I personally prefer the 'knowledge is power' version. It has certainly helped me a trillion, and most of my power, strength, support, has come from this very site. It's a magical little place here. Gain your strength and take back your power right here, with these people. Nobody on the outside will ever understand what you're going through like the people on here.

Sending you cyber power jujus. Call me any time.

m

[marta]

You should be feeling a little better by now. That is, not feeling the effects of the mtx so much. The folic acid doesn't do much for you -- its only a replacement for the folic acid that the mtx tends to deplete. Its a rather mundane drug, but still necessary. I hope you are doing a lot better.

I was in your area a couple weeks ago. The Canadian gov't was nice enough to give me a NEXUS card, but I had to go to Blaine for an interview first. After the interview, we drove to Pt Roberts just to see that unique part of the US. Hardly seems worth the effort to keep it. Maybe we could make a deal like if Canada takes Seattle, we'll give you Pt Roberts, too? That would be a heck of a deal for the US. We could even throw in Portland if you like. :-)

We'll take you vdub. In an instant. Heck, California can come as well.
Now that you have a Nexus card, you have no excuse for not coming for a visit.
Ask Geoff, your suite is small but comfy and waiting for you. Sadly he can't vouch for the animals because the whole time he was here, we didn't see a single one...then he left, and we had some eating the plants in my garden just outside his window. Too funny.

[vdub]

Oh, thanks, Marta! We should plan on a visit to Jasper.

[marta]

Oh, thanks, Marta! We should plan on a visit to Jasper.

Anytime buddy, any time!

Mi casa es tu casa!

[vdub]

How did the interview go? I've heard it's hard to get a Nexus pass from so many people, so your one of the lucky one's
It was kind of a non-interview. It was over before I knew it. I was expecting a grilling, but I was only asked if I'd been a good guy and that was about it.

[Susan55]

Hi Marta
Yes, I got your msg, thanks ;)

I totally agree "Power is Knowledge". I will be calling you at the end of the week if that is OK? My son comes tomorrow from San Fran I am so excited to see him and have someone stay with me for 4 days.

s


I just sent you a couple of PM's but wanted to say that the unknown is the worst part of the disease. That's why I think it's so good to know as much as possible, then you slowly eliminate the unknowns (well not all of them because that's the magical thing about life - the unknown) but all the unknowns when it comes to how this disease operates and how you can squash it.

Some people go with the 'ignorance is bliss' ideology, I personally prefer the 'knowledge is power' version. It has certainly helped me a trillion, and most of my power, strength, support, has come from this very site. It's a magical little place here. Gain your strength and take back your power right here, with these people. Nobody on the outside will ever understand what you're going through like the people on here.

Sending you cyber power jujus. Call me any time.

m

[LisaT]

Sorry I haven't been around... I will write a proper answer later as I have to get my kids off to school. Susan, you sound super organized and on top of things. I still don't have a proper file with labs and all of my info in one place. You can ask your rheumy to cc all your other docs. She should have in the first place. Vdub you were 10 minutes from me... where do you live? We in BC need point Roberts to stay American. We ship all of our online purchases from Amazon and other US sites there and drive the 15 minutes to pick them up, fill up with cheaper gas, and head back to Canada. They never make us pay duty.

[vdub]

We ship all of our online purchases from Amazon and other US sites there
Now that is funny! Good show! Keep up the good work and we'll keep Pt Roberts! At least I can now say I have been there! :)