Methotrexate Journey

Rhiannon:

I basically dose my Prednisone daily based on symptoms of the day. I usually try to stick to 10 mg's, but on really bad days when inflammation is high, I up the dose to maybe 20 or 25 for a few days. It's not the ideal way to manage things, but it's the only way I know to get through the work day and be able to function. It works most of the time. Two Rheumatologists that I've had have both been okay with that. I know to stick with the lowest possible dose.

I know the side effects I'm having now are from the new drug. It can cause nausea and diarrhea and that's what I have. It's known to irritate the stomach lining and that's exactly what it has been doing. It started on Saturday, about 12 hours after I took it. Lupus doesn't usually cause that for me. It is hard to distinguish side effects from symptoms sometimes, but this one is pretty distinctive.

I like Sandi am having the same side effects but I am also getting headaches so yeah the Meth does have it's downfalls. The nausea come and goes but there are times when I have had to stop eating in the middle of dinner because it is so bad. The side effects usually calm down on day three or four after taking the Meth and by then it is nearly time to start all over again.

My Rheumatologists also has given the ok to take Pred if needed but I have only needed to do this on a couple of days so living pain free is a benefit for me. I am taking it for sero negative rheumatoid arthritis not Lupus.

When I first started this medication I thought it was pretty good as far as side effects but it seems as though it takes time to build up in your system but if it stays like this I think I will stick with it because of the relief from the pain.

Anyway today is my first lot of tests since starting so it will be interesting to see what the bloods show.
Sandi,
Do you get a dry cough?

Sorry you two! Is it helping though for the reason you are taking it? My friend who injected 1x a week had no problems.

Milly I hope you get some good test results!

I get weird dry coughing here and there. Just once or twice a day. This weekend was a total bust as far as getting things done, so I don't really want to ruin every weekend feeling sick, just to be okay enough for work. I also have to jam pack housework and laundry into weekends, and can't do that feeling like this. What to do. Next weekend I have a wedding to go to, so I have to be okay. I'm afraid the side effects are just going to get worse as time goes on, then might get better. I don't know if I should go to the injections or not. Some people do better on those.

My blood work is on June 14.

Sorry you are having side effects too, Milly!

Melinda, it is working really well for the pain, pretty much pain free most days. I have had to take 10mg of prednisone two days since I have started. So I am really pleased with that result at one stage I was wearing morphine patches and they where doing nothing.

I see my doctor again in June so if the nausea is still as bad I will ask about injections. Here in OZ they do blood test every fortnight for three months.

Sandi, I had a look on a RA discussion board and they suggested have a bowl of oats or some sort of cereal before taking the meds apparently makes it easier on the stomach.

Hi Milly and Sandy,

I feel bad for both of you--trying to deal with these meds and pain. I am like you Sandy; I do awful on drugs. I always get the side effects after a few days to a week. But, if you have to deal with a lot of pain, it is worth it to try and stick it out. I am still feeling tired from all the meds I had last year to bring up my platelets. I just learn to not fight it, and try and lay down once in a while. And, don't worry about your hair; if a little falls out, it will most likely come back. Mine started thinning out after I had my son when I was 28 - 29 years old. Then it got worse five years ago with my ITP treatment. It probably has something to do with my hormones more than anthing else.

I will keep both of you in my prayers. Sandy, I know you have a lot on your plate with your job and trying to keep up your household. I was just like you at your age and know how you feel. Just take a day at a time--but do remember to spend some time on yourself once in a while and to get some rest when you can.

I'm not so much worried about my hair right now. Just wondering how to have a life.

Hey Sandi, sat here for a while trying to think of some great words of wisdom but nothing came to me. (not very often I am stuck for words)

I don't know how you have kept going for as long as you have, I have only been at this for 15 months and it sure gets me down sometimes. You have been doing this for years. I really hope you are ok for the wedding.

Is the Meth helping with the pain at all?

Some days I think it's helping and some days I don't think so. I react to the weather and stress and a few other things, so other forces definitely play a part. I can't say I've been pain-free at all, just had a few better days here and there.

The main problem is that I've been so tired, light-headed and fuzzy. That's normal for me too but it's gotten worse.

I have off on Friday, so I'm going to take the MTX a day early to hopefully be okay for the wedding.

Sandy,
Do you get enough rest at night? You do need at least 8 hours of sleep a night. I know
it's hard to say when you have so much to do, but as long as you don't have insomnia (that's what I have had most of my life), you should strive to get that rest in. This is something you should do for yourself.

Hope you feel okay for your wedding and try to enjoy yourself.

I attempt to get 8 hours of sleep, but it doesn't always work out. I have trouble falling asleep and also have nightmares. I have been coming home from work and taking a nap....can't help it. I've been doing next to nothing around the house during the week. I hate this.

Sandy, there is nothing wrong with coming home from work and taking a nap. You need your rest one way or another. Your nightmares could be caused from your medication. I had nightmares last year when I was on a lot of medication. You need to take care of yourself first (unless you have very young children--which I know you don't). Is there any chance that you could get someone to come and help you clean your house every couple of weeks? This might help a lot and relieve some stress.

Last year I had my relapse due to trying to always please everyone around me (including my husband and son--who still lives with us). I didn't realize that my body was tired--but I kept pushing myself to get things done. I've changed since then; only take one thing at a time and sometimes the house doesn't get cleaned. You do need to take care of yourself first.

Ok I have decided to try something different I usually take MTX at night before I go to bed, today Friday, I have taken it in the morning. I was thinking about it and doing some research and I thought if I try taking it in the morning maybe if I can drink a lot of water during the day side effects maybe less.
I will let you know how this goes.

Thanks everyone for the support!

Milly - Good luck - let me know! I'm on my way to get my poison now. I'm not brave enough to take it during the day. I finally had a good day today, just in time for the next dose.

Dee Dee - it all sounds great in theory. The problem is that when the house work doesn't get done, it piles up and gets worse. I tend to obsess about things being clean and kept up. I have a mental schedule in my head at all times with goals that must be met each day. Too many years of juggling job, kids and house. It's a major personality flaw. I'm working on it.

Sandy,
Good for you that you are working on it! I was like you when I was your age. Now, I've mellowed out some. I do like the house being clean--but I'm not as obsessed as I was when I was younger. Plus, I use to cook all the time; now, I only cook a few nights a week.

What bothered me the most was working so hard all the years--then you get to the age where we want to slow down and enjoy ourselves--And, all this sickness comes on all at once. So, I've learned not to wait on the men at home like I use to--let them fend for themselves at times. Just like to share some wisdom in my older age.

Well that sure has blown a hole in that idea, I really thought that the water would help. I lasted three hours at work and had to come home. I felt so bad headache, nausea, chills. I won't be doing that again, back to night time dosing and sleeping through this.

I am really lucky with my work I have unlimited paid sick leave but I try not to call in sick too much. I am also very honest with them and let them know all that is wrong with me, they have a Doctor that looks at case files for people that have illness leave and he advises them if he thinks that the leave is excessive. He contacted my Doctor last year as I was off for about six months due to the combined effect of parathyroid tumour and 40mg of prednisone and he agreed that I shouldn't be at work.

I understand what Dee Dee is saying but I find this to be difficult as well, but I have learn't as she says that if you are feeling bad have a quick nap and then try to get things done.

Glad you had a good day and you can edit the brave in your posting to stupid. I wouldn't recommend doing that to anybody, my motto now is take your poison and go to bed. I hope you get to the wedding and have a great time.

Ooooooo not good, Milly! Not stupid, just trying to find your routine.

I have a vacation day today - trying to get things done. Woke up and feel ok so far.

Milly I'm sorry!! Bless your heart - that had to have been the pits!

I've given up - Sandi isn't going to change. I'm with DeeDee - with age came the realization that there is more to life than cleaning, it's kind of fun to thumb my nose at the dust and do what I want instead

Milly, I'm sorry for you, too, that you had such a rough day! It's terrible to be at work and start to notice all those horrible symtoms! Bless you for even trying it. Hopefully, this will get a little easier.

Sandy, hope you have a good day and also hope that the wedding turns out really good for you. Try to forget things for a while.

Well ladies, it matters a heck of a lot when Monday morning comes and I have nothing to wear to work and no clean towels to shower with. My house isn't spotless, but I can't let it get to the point where it's embarrassing either. I can't relax in clutter.

I have been seeing a therapist and his assignment for me once was to spontaneously take a relaxing bath. Never happened. I yam what I yam.

Sandi you certainly are what you yam and I am sure we all love you for what you yam, you sure make my day sometimes, the wiki thing in another post proves what a sense of humour you have and made me laugh a lot so thanks for that.

Ok I am feeling better today after shooting myself in the foot yesterday but when I got up this morning I have some really strange skin thing going on. Around my elbow region I have these big red blothches and it's like a rash also I have these little red spots on other areas. On my legs I have a few spots sorta looks like bruising but not like a normal bruise, hard to explain.

It's Saturday here so can't contact the Dr but I will ring him Monday is they are still there.

That bath thing will happen one day, but don't stress over it.

No rashes for you! Yes, get that checked out!

Yes Milly get those blotches and rash checked out - if it gets worse do you have an emergency room near by?

Yeah Melinda, have a hospital in town. Don't really like going there though it is usually full of trainee Doctors that get pretty excited about low platelets and and most other things. I know they have to learn but they had me thinking I was knocking on heaven's door when I first had itp.

My Doctor will come to my home if I need him, but at the moment it isn't any worse so I will get it checked tomorrow.
Thanks all, you are a great support and at the moment life is a bit of a struggle some decisions are so hard do you go with pain or take meds that relieve the pain but make you feel not so good?

Wow, Milly, must be nice to have a doctor who still makes house calls! :laugh: That's almost unheard of here!

Yeah he is a great Doctor, He is really calm, he keeps me calm we really have a pretty good health system in oz. I have been in hospital four times in the last 12 months, three times to have major surgery and once having a count of 2 and really bad bleeding and this has cost me nothing.

My doctor is a GP and I don't have a hemotologist, but I do have a professor that is a specialist with auto immune problems, and a great team of other drs gyno ect. My biggest problem is whenever I need any surgery done I have to travel to Sydney, about 3 hours away.

I really feel for others on here that have to worry about the costs of medical help. But yeah my doctor will come to my home any time day or night.

Milly, I hope you are feeling better today--and call your doctor first thing on Tuesday. It sounds like you have such a nice doctor! How rare now a days.

Also, Australia sounds like such a beautiful place to live! There is so much worry living her in the US. Cindy, I bet Cananda is also very lovely. And a lot easier with their health-care systems. In the US, the GOP wants to do away with our senior Medicare system--which would be a disaster down the road.

Ok the doctor gave me some cortisone cream for the rash to try for a couple of days it's not getting any worse.

DeeDee I have looked at US healthcare system, just out of interest, it seems so complicated I couldn't really understand how it works. What do the unemployed people do if they get sick or their children what happens then?

In Australia a percentage of tax you pay provides you with healthcare as a public patient in a hospital and many doctors accept the medicare payment as full payment. All medication in hospital are provided at no out of pocket cost. You can choose to insure yourself as a private patient for about 8 to 10k per year for a family ( this just gives you choice of Doctor and other benefits).
I still would like to visit the US and Canada one day as Canada looks beautiful and the US seems very exciting and looks to have some beautiful places. I have been ti Fiji a few times and it is truely a beautiful place with fantastic people.

Anyway so far this week on the meth journey I am going ok, it's funny with this med sometimes it makes you feel quiet unwell and then there are the good days where no side effects are felt, today was one of those.
Sandi, hope the wedding went well and you are feeling better!

I gotta admit, I'm proud to be Canadian. I'm not happy with the health care system, but it is better than some places. I feel really bad for the US who have such long wait times and have out of pocket co-pays. My Rituxan treatment was covered by my MediCare. I don't pay for my doctor's visits or hospital stays either.

Milly, I would love to show you my part of the country. Just don't plan on coming between Oct. to March. That's our winter, and some years it can be a you know what!