Methotrexate Journey

Okay. Stop spinning...good idea.

Either way, I hope you find out what is going on and I hope it makes sense. Let me know!

Milly I hope this guy does right by you! Of course you are spinning, I would be too.

My stepmom was put on meth for RA - turns out she didn't have RA.
A good friend was being treated for years and years for Lupus, well she has MS and not Lupus - found that out a few years ago.

It gets old always having something wrong. Right now I am thinking of suing my thyroid for breach of promise & alienation of affection - don't think I would have trouble finding a sympathetic jury.

You will get through this. And you always have us here to talk to - we're here for you!

Thanks Melinda, that really means alot, I have friends to talk to but they really don't understand like you guys do, the people on here know what it is like to be constantly at the doctors and always having tests done. My friends are understanding and they can see that I am not right, I can't say I am sick just not feeling right, I said to my husband I cannot remember what it feels like to be not in pain and have energy. Two years ago I was working a 50 hour week and doing it easy now I do 30 and it is a struggle.
The RA dx I never really agreed with anyway. I totally agree about the thyroid though, since my thyroid and me parted ways it is a constant battle to get thyroxine levels right, I think having the thyroid removed was a big mistake, but hey can't put it back.

I have calmed down a bit now and I have had the tests done so now it is just wait and see, I have decided I am not going to just start the prednisone roundabout again, I am just going to see what happens when the effects of the methotrexate go. Maybe when all this started it was just the effects of coming of prednisone but time will tell.

Thanks soooo much to all of you, just being able to say what is on my mind really helps me.

Milly, I think it's hard to fill normal once you have had your thyroid gland removed. My thyroid runs under-active (but I don't take any meds--just borderline). I know this affects how I feel somewhat. I had thyroid problems since I was 16-and it ran in my family. I think it all ties in together.

I also agree with you; I would wait to take prednesone again--unless he has a very good reason for it. Good luck.

Ha - I forgot to tell you guys. I saw a substitute Rheumatologist two weeks ago because I wanted to ask questions about the surgery and if I should take any precautions. My regular doctor is on maternity leave.

Anyway, she was useless. I asked if people with Lupus are reported to have problems with rejection of the cadaver bone - she didn't know. I asked if people with Lupus are reported to have reactions to the titanium rods that are inserted. She didn't know. All she did was chastise me for stopping the MTX. I think it was a wise decision to stop before surgery to cut down on the risk of infection. I couldn't deal with the side effects of that and the stenosis and still function. She didn't get it.

All she said was that I should have an IV of steroids before the surgery because I've been on Prednisone for so long. Okay, so who is going to tell the Neurosurgeon? If I tell him, will he know what to do?

She also said when I recover, I'm going to have to make a treatment decision. The choices are: MTX, Imuran or Benlysta. We'll see about that, Sista! Depending on how I feel, I MIGHT consider MTX again at a lower dose.

Sandi, you might respond well to Imuran, I was told at conference by Lieberman (Liebman?) that there is a correlation between Rituxan response and Imuran response. Although I noticed a new post recently that seemed like the same guy gave the opposite advice.
Erica

For people that are supposed to be smart doctors sure are clueless sometimes,
Sandi, I think that is a wise decision to stop MTX before the surgery, I had a flu recently when I was still on MTX and it turned into an infection that needed two weeks of antibiotics to get it under control.
Dee Dee, just can't see the point of taking prednisone just in case, I have thought about all this over the last couple of days and I think it is time to just take a step back from meds and see what happens, the doctor could not give me a valid reason for taking prednisone.
I have done a bit of reading and I am hoping that maybe it could be a bit of steroid myopathy, but time will tell (all this started about three weeks after stopping prednisone).
So I am hoping that as a best case senario worst case I am not going there just yet. Anyway this is my first Saturday without MTX and it is good to wake up without the hangover feeling.

Milly - don't count on myopathy. I've had doctors tell me that was my problem for years, but everytime they test for it, I don't have it. You have to be on steroids for a pretty long time to acquire myopathy. I've been complaining of weak muscles for a few years. I finally failed the simple muscle strength tests - when you lay down and try to raise your leg while they push on it. I couldn't do it. I know now that it's probably the stenosis. Could be the years of low D too. Have you had your D levels checked?

D levels have never been tested, but I will ask. I had all the other tests yesterday, I felt really good about after having the the injection for the test, I guess I am just looking for answers.

I know you are. The eternal quest. Don't give up. I've been doing it for years. They keep finding things, but not the thing that will make a difference.

What injection?

The hormone injection they give you when they do the test. Can't remember the name of it though. I will have a look when I get home.

Milly I can't blame you for not wanting to start on the prednisone yet since there is no diagnosis yet. I'd want to wait to find out test results first too. My thyroid was killed off 10 years ago - just had to have another change in med this week.

Great you felt better when you woke up this morning thanks to no meth!

Sandi you sub-rheumatologist just didn't know who she was dealing with did she? Did you tell her to get in contact with your surgeon?

She just happens to be the one that I fired years ago. She ended up in a group with some Rheumatologists who opened an office in my area. I don't like her, but had no choice. She didn't remember me.

SHe seemed to have no interest in contacting my surgeon.

Sandy, Another caring doctor!! Keep on top of things before you have your surgery just to make sure everything is done properly. Just recently I was reading an article about all the mistakes doctors are making while you are in the hospital (it was on AARP site--it was like 1 in 7 are mistakes!).

Also, look up Immuran before you ever take it. My friend took it for a while and it caused her some additional lung damage (I'm not sure why). Doctors like yours shouldn't even be practicing. I had one like her when I was in the hospital--and I pleaded until I got rid of her (and she was the top onocologist/hemo-that was part of the problem--she was more onocologist then hemo).

Ladies - I never knew anyone who was more on top of things than me. I started to wonder about a reaction to the titanium/nickel, so I called the surgeon's office and asked about it. They are sending me a tiny titanium screw that I have to tape to my body for five days. It costs $500 and I have to return it. The thing is, I do not believe that will really tell if I will react to the nickel that is in it, and there is a blood test for that. Of course it's an independent lab and probably costs a fortune. I was thinking I should go for the blood test, but if it showed I am allergic to nickel, what then? It's a can of worms that I'm not sure I should open.

Dee Dee - my daughter works in an OR at one of the top Pittsburgh hospitals. People come from all over the world to have surgry there. I've heard many stories about things that are not done properly. She complains all the time. SHe is more afraid of surgery than anyone I know, because she is well aware of what can happen.

I have no plans at this time to take Imuran. I have researched it since it's been mentioned to me quite a few times.

Well, gotta go check the mail and see if my $500 screw is here.

Sandi wrote: All she said was that I should have an IV of steroids before the surgery because I've been on Prednisone for so long. Okay, so who is going to tell the Neurosurgeon? If I tell him, will he know what to do?

They should definitely do this as the body needs more steroid when it's under stress during and after surgey and your body won't make more on its own. When I had surgery after taking steroids, the anaesthetist was the one who dealt with it and gave me a dex drip during the op and one the next day. The anaesthetist always talks to us before surgery to check our medical history and so on. Does it work that way with you?

It's been so long since I've had surgery that I don't remember. I know surgry can be a trauma to the body and I should have an IV, but how pushy should I be about it?

I'm more worried someone will give me something I shouldn't have.

I don't imagine for a moment that they won't at least consider steroid cover. If you've been on 5 mg a day they may not consider it necessary but if you've been on higher than that they will. I wouldn't worry about it.

I've been on 15 mg's for over a year.

For both my splenectomy and gall bladder surgeries, I had prednisone in iv drip before going to the OR.

Well, they will probably know that then.

So I am now three weeks with no methotrexate and I have not felt this good for two years, no pain, no skin pain. I haven't got the results of the tests yet but I think all will be ok.

I am now thinking that the original pain may have been coming of prednisone and maybe it would have went on it's own. I guess time will tell (I am assuming that the methotrexate would be out of my system by now)

I don't know, Mil. I think it stays for a while. I've been off for six weeks and can tell that it's still working a bit. I was on the injections though which might make a difference. I'm glad you are doing better!

Milly,
It's great to hear that you are feeling better. Sometimes it's hard to pinpoint what the problem is.

Sandy,
I want to wish you good luck with your surgery and to wish you a speedy recovery. Please keep us posted.

Hey my ex-meth head friend [although still my friend] it is great to hear you are feeling so good!! That is really good news! Let us know when those test results are back].

So what happened with the steroid cover, Sandi? Did they do it without prompting?

No, they didn't do it at all. I don't seem to be any worse for wear. I just had IV fluids and antibiotics.

Well I have finally got the test results back and my adrenaline gland is working but only just, so back on prednisone for me, certainly explains a lot though.
My platelet level is down to 130, hct level is high and mcv level is high.

So I have started back on low dose prednisone for a month and the doctor is going to discuss the results with a specialist in Sydney, from what he said today there is an injection that you can have that stimulates the adrenaline gland.
What a great pickup from this doctor.
Sandi,
I hope you are all recovered from your surgery.

Wow Milly - I'm glad they found that. How long were you off of Prednisone? What dose are you on now?

I go back to work on Monday. It was nice to have a break. I haven't really had one in 16 years. It's a shame you have to have surgery to get a break. I do have 3 other surgeries on the back burner.....none critical though.

Sandi,
I was on pred for about 10 or 11 months starting at 75mg for about two months and slowly tapering but I was really only on a dose below 25mg for the last month of the process.

I have been off pred now for 14 months.

I am now back on 10mg a day just to boost it enough until this doctor discusses the problem with another one.

So now I know why I am so tired and run down all the time,

So glad you are going ok, glad you enjoyed the break, just wish it was under better circumstances for you.