Methotrexate Journey

Hi Milly,
I'm glad that your doctor wasn't too concerned about your rash; that is a good sign.

In the U.S., it is a very complicated healthcare system (and, it's getting harder to understand as they implement Obama's health care). If you are unemployed and do not have any money, all you can do is go to the emergency. They do have a system in place for families with children and it is called Medicaid (but, you do have to qualify--like only having a certain amount of money in the bank, a home, and one car). Obama's health care plan does provide for health coverage for more people--but most of us do not understand it just yet. Every body has a different health plan, depending on your employer or what you purchase. At the present, the GOP in congress wants to get rid of our Senior health care (Medicare for seniors 65 years and older). I will have to say that it is very stressful not knowing what is going to happen in the future.

I have probably said enough to confuse you! You are very fortunate where you live.

This weeks dose went pretty good. No real side effects except fatigue which I have anyway. How about you, Milly?

I had a good week, it is so good to be pain free. I started a post a few weeks ago about not sleeping very well and I thought the reason for this was after effects of prednisone but now I am 100 per cent sure it was because of pain, I now sleep at least 8 hours a night.

I still get a headache and fatigue but only for the first day or so after taking the tablets, so I am happy with that(only comes in waves not all the time)

Second bloods tomorrow, I haven't got results from the first ones yet because I told the doctor that unless something is wrong I would catch up with him when I go back in a couple of weeks( he will ring me if any changes in results)

It is so good to feel normal again (my friends tell me I am far from normal at the best of times) LOL

Alleluia! I am very happy for both of you. I hope this treatment keeps working for you. Thanks for posting this good news.

Glad to hear that you are both doing well! It's nice to have something work; especially to get a break from the pain and to sleep better.

Sandy, hope you enjoyed the wedding and didn't get too tired out. Hope this week is good for both of you.

Sandi just a quick question, do you find that some weeks are really good as far as side effects and some are pretty bad. Last week for me was like a dream, this week is a nightmare.

I don't know. I'm having a hard time distinguishing between side effects, Lupus symptoms, stress and possibly being sick. I feel different every day and haven't really had a good day yet.

I am really sorry to hear that maybe you just need more time. I read that it can take up to 3 months to feel the full effects. I have a pretty rough day for the first 24 hours after taking it just really fatigued and a bit like a severe dose of the flu but all other days are good, so to me this is ok.

I slept most of yesterday so I miss most of one day of a weekend, didn't really mind this as I had Friday off as annual leave day and Monday is a public holiday (another good thing about Australia we will have a public holiday for the opening of an envelope)lol

You have had a rough week anyway with your pet and that must of been pretty stressful. I just wish for you a pain free life, there has to be an answer for you somewhere.

I saw the Rheumatologist today and she wants me to raise my dose to 15 mg's, then blood work in 4 weeks. I got labs done today, but obviously don't have results. I did get copies of the labs from 6 weeks ago but didn't look at them yet.

I looked at the labs. Whites were a bit high and this was odd - my TSH is .82. Still in range, but really low for me. All other blood work was great. Platelets were 276. We'll see if that holds up on MTX.

Hopefully that will help, hope the side effects don't increase with the dose increase. Good that the tests are ok.
I get my results next week. My platelets are never at that level, the only time they have been in the 200 is after surgery. Even on 75mg of prednisone they were only in the 120 to 140 (not on any prednisone at the moment) Do some people just have lower counts? I know these counts are ok, just seems as though mine never get that high.

It all depends on the treatment that you use that might give you remission. Some have remissions at higher counts. I'd actually prefer to have a lower count since I've had antibodies that cause clots.

Wahoo, I am so excited just got my last platelet count from two weeks ago 216, I have never have 216 with no treatment and no surgery.

Ok so I have my little celebration I go to the rumotologist tomorrow to check all the other tests hoping they are all ok, I will let you know.

Sandi, I hope you are doing ok, how did you go with the higher dose?

Wow Milly what a great count! Happy for you!!

Great news, Milly!

I didn't start the higher dose yet. I had another wedding this past Saturday and my doctor and I decided that it would be better to wait until the following weekend. I have been doing pretty good as far as side effects though. Loss of appetite is about the only thing, so I've lost some weight which is not a bad thing.

That's great news Milly!; I'm really happy for you. It's nice to get a break on the ITP once in a while--just once thing less to worry about.

And, Sandy, it's always nice to loss weight without even trying. I always have to watch my weight; that's why I'm always working out. If I didn't work out, I'm sure I would have gained a lot of weight by now. Hope you and Milly both have a great week.

Dee Dee

How are you doing there, Milly? Anything new?

I am doing ok as far as the Meth goes, no pain so it's doing what it supposed to do. I didn't make it to the Doctors last week (got snowed in) so I go next week.

I am finding that I am getting a lot of rashes and if I get scratched or a paper cut it really takes a lonf time to heal. I have had a few viruses and seem to take a bit longer to get over these then usual. (I work with the public and come in contact with a lot of people, I will never understand why people bring their children out when they are so sick and throwing up)

One thing I have noticed over the last few weeks is that I seem to bit a bit depressed I am unsure if it is just me trying to get my head around the changes in life in general or if it's a side effect of the Methotrexate. I am just having a hard time accepting that less then 18 months ago I was not on any medication, never sick and now I have a lot less energy, not much of an appetite and I just wonder if something has been missed or am I just expecting to much to feel the way I used to.

I am sure I will be ok, just need to shake these blues and I am sure I will.

Anyway enough of my complaining, how are you doing with your larger dose? Is it helping with your pain?

Milly I had to smile when I read "..as the Meth goes" - here meth is a very nasty homemade drug and people get arrested for making it or possession of it.

Getting serious - I am so sorry you are having problems, bless your heart! Just with ITP itself my owies did take longer to heal, maybe it was prednsione. So maybe it the methotrexate that is causing you to heal slower?

You must have a long list of questions for when you see the doctor next week. Thinking of you and hope you are doing better!!

Yeah Melinda, meth means the same here, that's just my sick twisted humour. I figure if I am going to take might as well give it a name.

On the serious side I do have some questions for my Doctor, but even with all the other side effects I am still glad I have found a solution to the pain. Just feeling a little flat at the moment. It is winter in Oz and maybe that is all that is causing this mood, can't get outside much.
So I will continue with my Meth and hope I don't get arrested (still can laugh) so I guess I am ok. I shouldn't complain cause I really love my life even with all it's ups and downs.

Also Melinda, you keep me laughing with some of your quick comments in other postings.

Milly,
Don't be too hard on yourself. You have gone through a lot in the last 18 months. Just these meds alone (that we have to take) can make you depressed. I, too, have a lot less energy from my ITP (or the meds?). And, this makes me depressed at times, too. But, then I think, if I can stay well and have the problems in remission for a while--it is really worth it.

I am finding that I'm more depressed too, and I did read it can be a side effect. I've also had a lot of things going on in my personal life, so that could also be causing it. I'm trying to ignore it. The worst part is feeling so out of it a few days after taking the drug. I could just sleep all day, but don't have time for that.

I have problems healing too, but that's been going on for a while. Probably because of Prednisone. I have razor nicks that won't go away - those used to heal in a few weeks.

It's not really doing much for pain yet, maybe a little, but I still can't cut back on Prednisone, Vicodin, Naproxen or Flexeril. I've still got 6 weeks to go before it should have kicked in. I'm willing to give it more time. It's not affecting me as much as CellCept or Lyrica did.

What a shame they can't make a side effect that makes you feel good, not depressed. I don't really think I am depressed just a bit down and yeah sure do know what you mean about the sleeping and feeling out of it.

I have a few things with work that I am not enjoying either (I am a good millionaire going to waste).

Sandi,
I sure wish that you could get some relief from pain, but it is good your prepared to give it more time. I hope it helps soon.
Dee Dee,
Thanks so much for the words of wisdom and I agree we are owe own worst critics, we do expect too much from ourselves.
Everyone
I hope you all know how grateful I am for all your support and good wishes, this really means alot to me and it is so good to be able to air my worries to friends that really understand. I do try not to talk to my family about this because I don't want them to worry.
I remember back to the time I was in the ER and bleeding so bad and my poor parents (in there 70) walked in to see me, I was hooked up to all these machines had transfusions going and a crash cart beside my bed, my poor dad just broke down and cried and from that day I swore I would never want to make him feel so bad again. So I put on a brave front and carry on for them.

You are too funny - I'll call you my Meth Head Friend From Australia

If you are having a yucky cold winter and not much sun I'd say that's not helping with your mood. I was so tired of winter this year, it didn't seem that cold to me but I just got tired of cold and blah weather - and I'm lucky, I live where the sun shines most days, other parts of the States turn gray and stay that way the whole winter. I know you love your life - and you will get through this, you will!

I know how your father felt - went through an illness with our younger son, hit him when he was 20, and it about killed me. Well he & I were talking about things a few years later and we discovered he was putting on the brave front for me and I was putting on the brave front for him.

Don't worry about getting arrested, just don't blow yourself up making that stuff

Thank you for the "Thank you", Milly. We all just need to "hang in there". We all have our personal problems with these meds (along with other personal problems, too).

Milly,
Hopefully, the Meth will help you and eventually the side effects will be more bareable. Sometimes, you just have to wait and see.
And, Sandy,
It's hard for you to tell because you have to take the other meds, too; so, for you it may take a little longer to see if it is working the way it should. If you were taking it by itself, you'd know right away. At least that's what happens with me. I usually know by 6 weeks what is going on with a medication.

And, Milly, I know how you feel--as I was in the hospital just last year hooked up to all those machines. It is an experience you never forget. Good luck to all of you, Dee Dee

I would have thought that with all of the meds and the MTX, I shouldn't feel anything. I thought that I wouldn't be thinking about my next doses of the other meds, but I do (even the non-addictive ones).

Yeah, I agree Sandi you would think with all you take that there would be no pain. Don't know what we are going to do with you!!!

Well I went back to the Doctor today, so far all blood test are staying in normal range, had a really good talk with him (he is such a nice guy) and discussed all the side effects I have been having and he thinks with time these should decrease. He said that your body will adjust and at the moment it is still very early days and it will take time.

The long term plan is to continue with the meth (so I can still be your meth head friend from oz, Melinda) and have two more fortnightly blood tests, then have tests every six weeks for three months and after that bloods to be done every two months.
The one thing that did worry me a bit was he ask him was there a time frame when things could go wrong and there isn't, it could happen at any time in the future. I thought that maybe if all was ok for the first 3 to 6 months all would be good. He did tell me not to worry as I would be closely watched.
He also said that sometimes your body, immune system can become resistant to the dose and it may need to be increased.
Over all he is very pleased with the results that I am having and so am I. He did also tell me that about 30% of all people with Rheumatoid arthritis never have a positive blood test to show that the arthritis is present.
So the journey continues.

Is this a rheumatologist My Meth Head Friend From Oz? He sounds good, whatever he is. So glad our blood work is staying in normal range, that's great!

It took a long time before my niece was diagnosed with RA so what he said makes sense.

Yeah he is a rheumatologist and he is great, he takes so much time to explain everything and he seems to know a lot about immune system problems, his parting words were we just want you to be pain free with the least ammount of side effects.