Methotrexate Journey

Holy Moly! Six months! I see my Rheumatologist in 3 months. I hope you get labs in between at least.

I am supposed to take the MTX spread out over 2 days now, and the Leukovorin should help with the side effects. I have to quit the daily folic acid and take Leukovorin on Fridays with the first MTX weekend dose. No more getting stuck in the bathroom for me!

Hey Meth Head you are right - you can't live life being scared of something that may never come about! I just mentioned about my friend in case you were doubting the lupus diagnosis. I didn't mean looking for answers should consume, but if not sure you are given the right answer then look further.

You are doing great in my opinion!

Hey Melinda, that's ok and thanks for mentioning your friend I am grateful for any thoughts, idea's and I am doing ok, I figure what ever will be will be. Just get a little frustrated sometimes, you would know what it is like you think you have found a Dr that can help you but then your not so sure about that Dr but anyway I will give him another go (maybe he was having a bad day). I think it is just a time thing. I am still not sure it is Rheumatoid Arthritis or early signs of Lupus. Thanks for your encouragement, how are you going anyway?
Meth Head.

Sandi
Still getting labs but now every two months and I thought six months was a bit far away considering that the dose is increased, happy you will be staying out of bathrooms.

Hey Sandi, I am one day after my second dose of 15mg and feel so much better. Got through the whole week with very little pain.
How are you going with your 20mg?

I'm doing okay, I guess. No increase in side effects, but I'm splitting the dose on Friday and Saturday and taking the Leukovorin. Cold, rainy days are coming so we'll see!

Hey Sandi, how are you going? Is it helping at all? I am still going good, bloods are due to be done in a couple of weeks, I have got lot's of bruising and petechia but I am hoping that it is just because of the Meth.

Eh, I don't know. I'm not noticing much improvement on this drug. I figured I'd give it until the cold weather really settled in, because that is when I feel the worst. It's been about two weeks and I've still had some really bad days. If things get worse, I might call the Rheumatologist and see if there are any other tricks we could pull out. I don't know what's left besides Benlysta or stronger pain meds.

I'm glad you're doing well! Maybe time to get those platelets checked to be on the safe side? I've had a lot of bruises too though.

Yeah I think I might have blood test done a week early, sort of been in denial a bit about the platelets, everyday a new bruise and the petechia I have had for about ten days. I just hoped that I would get a little longer then 10 months from the ten months of pred that I had last year.

I think that you have given the Meth a good go and maybe it's time to try something else.

Did you get the blood test done early My Meth Head Friend?

Thinking of you!

I've also been thinking of both of you. Milly, I hope you got your platelets checked and that everything came out good. I get my checked soon, too; it's been 6 months so I do get nervous before I go in. I didn't think the doctor would let me go a whole 6 months.

Hey Melinda and DeeDee, yep I got the test done this week, neither the GP or the Rheumatologist contacted me with the results as yet. I am not confident that my GP would call, I think the time has come find a new GP, he is a really nice person but I just don't have confidence in him.

My husband and I had a conversation about this yesterday and we where just going over all the things he has missed in the last 12 months, pretty serious things like blood calcium levels that where so high I had to go into hospital for a day for treatment, a thyroid so large that it was cutting off my airway, bleeding from fibroids that lasted ten months, all these things were found by other doctors. Just writing this I feel pretty silly that I have allowed this to go on.

But time to move on I will find a new GP next week, I still have all these spots on my feet and legs (look like measles but I don't think you can have measles just on your feet and legs lol) and last night I had a bleed (small) from the bowel. It is so frustrating and hard to deal with all this Doctor stuff when I am not really used to Doctors but I am getting better at it.
DeeDee
I understand how you feel about the cbc it is a nervous time, I hope your results are good. If it WAS just up to my GP I would never be tested because he thinks the ITP is cured.
Melinda
Thanks for the thoughts always good to hear from you.

Sometimes I feel like a hypochondriac.
Anyway apart from all this stuff life is good in the land down under, summer is coming and the days are beautiful, you guys are coming into winter I guess and having some snow in parts of the USA.

Milly, don't feel bad about your doctor. My doctor spends about 3 minutes with me when I go in (I think he might just be over-loaded with patients). I feel like all I really need to do is go in for my blood test and do my own diagnosing. I could probably do the same job as him. It's getting really bad here in California and I think people just start to accept the level of care you get here. I don't know if he would call with my results either.

Just make sure you look out for yourself--that's what is important.

Milly - that is exactly why I get copies of my labs all the time...to double check things so nothing falls through the cracks. Paranoid? You betcha! I've just been able to fix a few symptoms that were significant to me that the doctors wouldn't have mentioned because the level was a low normal.

I hope your counts are okay - let me know!

I think I've come to the realization today that MTX is not doing anything. I knew it, but couldn't accept it. I don't know where to go from here. I had hoped that it would help the burning skin and flu-like symptoms that I get in the cold weather, but it's not helping. I can't decide if I want to continue with it so I'm not sure what to do about taking it tonight. Why bother.

Milly stop that, I don't want you to even think that any more!! You are NOT a hypocondriac, no way!! You know your body best, you are your own advocate - you have to watch out for yourself, take care of yourself.

Personally I'd get a new GP fast - I'm not telling you to do so, just telling you what I would do. Heck I fired my 3rd endocrinologist just because he called me Melissa instead of Melinda - and here you have been putting up with a doctor who missed a very enlarged thyroid gland, extremely high calcium levels in your blood and more.

You know something - I had the most fantastic, wonderful cat, Killian. She was diagnosed CRF [renal failure] when she was almost 4 1/2 years old - she was diagnosed with megacolon when she was almost 7 years old. She was given back to God July 6, 2010. I miss her very much. She taught me & my husband so so much, she was such a lady, such a love, she loved life - she taught us to accept, to live.

What I am getting at Milly is I joined a feline CRF discussion group and a feline megacolon discussion group. What I would tell people there was: If your human doctor did this or that would you put up with it? Expect of your cat's vet exactly what you would expect of your own doctor!! So I am telling you - expect of your own doctor what you would expect of your pet's vet.

Do not sell yourself short - you know if something isn't right with your own body. Got that Meth Head??

Got that Melinda, I think I need you to come and sort out my Doctors lol. Thanks all, I am going to find myself a new GP. You are so right Melinda I wouldn't allow a vet to treat my two little dogs like that.

I will let you know how I go.

Sandi, why don't you message Nate and see how he is going with Benlysta ?

I've been wondering about Nate. Maybe I will.

FYI - I quit MTX about four weeks ago. It wasn't doing anything. I have totally blown off my blood work the past few months too. I think I have a doctor appointment this month, but don't know for sure. I hope she is not upset with me. I just got tired of it all.

Oh well there is not much point taking it if it's not working. I really hope you can find something that works for you. I find it helps a lot with the pain most of the time but there are times when I need to take prednisone, just as a top up, it isn't often maybe every six or eight weeks. I know everyone hates prednisone but really nothing works as good as it does. My doctor doesn't like me taking it but what's a gal to do?
Anyway Sandi thanks for coming on this journey with me, it was so good to have someone to talk to about how I was feeling, please have your test's done and keep your appointments and I really hope you find something.

Sandi I can't believe you are concerned the doctor would be upset with you!
If something isn't working why take it - I think that is advice you would give to anyone here.

Milly I'm glad it is helping you most of the time!

I'm only concerned because I blew off my blood work. I have two scripts sitting on my desk at work. That wasn't very smart of me.

Also, her whole reason for suggesting the MTX was so I could get down to a lower dose of Prednisone. I don't see that happening. I'm really afraid she is going to cut my script. I'd have to quit my job - Prednisone is the only thing that gets me through the days. I just do not want any sort of arguments. I understand her reasons completely, but I have to do whatever it takes to function now.

You know me, normally I don't care what the doctors think, but I have to keep her happy so she will give me my meds. This is still a new doctor and I don't know her very well yet.

Sandi, I just looked at how long ago all this started 7 months and I think if the MTX isn't working for you after 7 months it ain't going to work.

You probably should have your blood work done to be sure that you have come away from the MTX without any problems. How long have you been on prednisone? I know what you mean though sometimes prednisone is the only thing that makes me completely pain free.

Talk to her maybe you can get her to understand.

I've been on Prednisone since March of 2004. I used to be able to take 5 mg's a day and do okay, but I haven't been able to take less than 15 mg's for about a year now, and I bump it up to 30 or 40 a few times a month when I have really bad days.

I will talk to her the next time I see her. I probably should have consulted her before stopping the MTX, I just didn't see the point. Her only other option is Benlysta.

Wow Sandi that's a long time on prednisone, would your adrenal gland function without the pred? Can they test for that? It would be hard to get off it anyway I would imagine, I know how hard it was on my body after nearly one year on it.
I think if you would have spoken to her about stopping the MTX she probably would have only increased the dose anyway, sometimes enough is enough.
I have researched Benlysta a little bit, seems the same as MTX, some people have good results some not so good.

Yes, they can test adrenal function, but not while a person is on Prednisone. I've tried a few times to get off of it with the slowest taper in the world. No way. I know how hard it can be to get off and I've done that a few times when I treated for ITP, but this is different.

MTX journey not done. I saw the Rheumatologist today, but didn't mention that I stopped taking it. The past few days I realized that so far, this winter is not quite as bad as the past winters have been and that's a small improvement. I told her that, and she decided to switch to injectable MTX, 25 mg's, which she thought would help even more. She still wants me to get off of Prednisone, or at least a lower dose. Since I'm not sure what is the best thing, I guess I'm willing to try it her way. Her plan is that if I'm still not seeing a difference in three months, she'll add Imuran. I don't think I'm too crazy about being that immunosuppressed, so I may just say no to that one. Prednisone, Imuran and MTX?

I'm going to wait until after the holidays to learn how to do the injections. In no hurry for that.

So my friend, back to the journey. All you can do is try and see what happens I have seen the the injections are better and less side effects. I don't think I would like to throw Imuran in there as well, I do have a friend on Imuren and she is always so ill, catches everything that goes around, she is on Imuren and prednisone.
I think there is a lot of us with this love, hate relationship with prednisone, I find that there is nothing else that makes me totally pain free but I save it for when I need to have a big day.
Good luck and I will be watching to see how they go.
Have a great Christmas and thanks for all the support through the year.

Sandy,
Be careful on adding Imuran. I have a friend with RA who was on Imuran for quite a while; she thinks it caused her to have lung problems. She is always sick with Bronchitis and has some scaring in her lungs. If you are not prone to colds and this type of problem, then I wouldn't worry as much. She did have her doctor take her off of it. When she get sick, she coughs for a long, long time.

Just thought I'd mention this.
Have a great holiday--and, I know you will do your research.

Dee Dee and Milly:

I already do have problems with bronchitis. I've been getting it twice a year and when I get it, it lasts for three months. I am afraid of too much immunosuppression so Imuran will be thought through very carefully. Hopefully it won't come to that and personally, I think Prednisone is just fine. I don't have a love/hate relationship with it any more; I love it because it is the only drug that really helps. The relief outweighs the side effects big time.

I started the MTX injections today. After the last few weeks, I really feel it is justified. I've never felt so sick with Lupus symptoms as I have lately, and work has been horrendously busy...even had to work overtime. I'm not sure how I'm standing upright half the time. I've bumped Prednisone up to 40 and it was the only way I could manage the days.

Doing the actual injection wasn't bad at all. It was the syringe prep that has me a bit freaked. I hope I remember all of the steps next Friday when I do it myself without the nurse present. I'm hoping the side effects are not too bad. I guess I'll find out by tomorrow.