methotrexate | Arthritis Information
Freesia, I saw where you are concerned about starting methotrexate. Believe me, so was I with the long list of side effects and warnings. I've been on 7.5mg once per week for 4 wks and so far so good. I haven't had any of the side effects yet but do drink alot of water now & take folic acid daily. My rheumatologist put me on this the same time as 15mg prednisone. She believes mtx is the lesser of two evils and we have started a slow decrease in the prednisone. If my PMR symptoms start to get worse she will increase the mtx.
All of these meds are scary but so were the PMR symptoms. I had no idea what was going on with my body but I did know that something was seriously wrong and I was freaking out. Good Luck!!!
Anyone else on methotrexate? I'd love to hear your experience with this drug.
russellcat,
Thanks so much for your input on methotrexate. I get the impression that my rheumatologist favors it over prednisone, too, although she is thankfully not pushing me to try it. Next time I see her I will ask her directly if she does think it's the lesser of 2 evils. I know that with the pred she is concerned about bone loss.
I'm so glad to hear you are not having bad side effects from it! You're the second person I've heard of now who is doing fine with it. The other person is a friend of a friend,
who takes it for RA--she's about 80+ years old and has taken it for 10 years with apparently no problems.
I'm with you on the pmr symptoms--exactly--I had no idea what was happening to my body and I was freaked out completely. I wish you continued luck with the mtx. That is great news.
Freesia,
I did try methotrexate a few months ago in an attempt to lower the prednisone. It didn't like me at all!
I was just reading the list of side effects that I had written down to talk to my rheumy about. It gave me really bad nausea and stomach pain, so much so that I had a hard time sleeping. It seemed to get worse the longer I was on it. I'm "only" 61. I'm going to look into the plaquenil that some of the others are taking before I go back to my rheumy tomorrow.
Hope you're feeling okay today. This is nasty stuff. I read one of your other posts where you commented that other people don't really understand. When I say I have a form of arthritis they say that they have it too.
It's hard for others to understand the severity of PMR. It's not "visible" to them. Friends see me and say I look great, that I must be feeling better. I AM better, the prednisone is keeping me moving, but I don't feel like myself at all anymore, and there's a lot that I'm unable to do.
I guess our best bet it to focus on all that we CAN do and not what we can't do.
Gentle hugs,
JannieFreesia and all. I have been on MTX for approx 12 months. Started at 10mg for 3 months then up to 15mgs. I try to drink more water on Wednesday and Thursday and I have the MTX during the evening meal. Some others take with a meal just before bed time. I tried this too but prefer earlier. I can be nauseated on Fridays so I try not to plan too much. Maxalon helps with the yucky feeling. Folic Acid is also recommended when taking MTX. I take it 5 nights a week.
Jannie, I also take Plaquenil.... no side effects with that for me.
and try telling people you have an... autoimmune disease!!! Don't you just love it when they say how well you look when you know you are puffed out with Pred and feeling okay in that hour, that's because you are not home in pain and fatigued
Lyn, I was curious to see if you are still on prednisone for the PMR? My doc says that if my PMR symptoms start to return with the reduction of prednisone she will increase my MTX dosage to see if that helps.
Also, are you on the planquenil for PMR and does it help with this or for the osteoarthritis? I have osteoarthritis in pretty much my entire spine and I haven't found anything to help with the pain it causes. Some injections help but one induced shingles (those I wouldn't wish on my worst enemy) and only lasted for 3 months and the radiofrequency ablation (they insert a needle into the pinched nerve, then heat it up to deaden the nerve) I had done two months ago is already starting to wear off.
Yes russellcat still on Pred for PMR. I just have major flares when I go below 4mg.
Plaquenil is also for PMR added year 3 I think. The Pred and Plaquenil have helped the Osteoarthritis and I take Panadol Osteo as well as needed.
I am so sorry you are having such pain etc with your Osteoarthritis. Its a real merry go round to get the right treatment / drug therapy that works for you.
I too take plaquenil for my returned PMR (which morphed in to zero negative RA)
I am on 400mg Plaq and 2.5 mg pred. Soem soreness in the AM (especially the hands) but after 10am I feel OK.
Noone understands what we are going through. I am done trying to explain it.
Hi Jannie,
Thanks for your reply!
I have a feeling that (like yours) my body would not like methotrexate. For one thing, you mention it is bothering your stomach. I had GERD, which was in remission until I started taking prednisone for pmr. The prednisone started my GERD (acid reflux) going again, and I feel that mtx would irritate my stomach even further and I just don't want to chance it. I'm having an endoscopy at the end of this month to see if there has been any damage from the pred. I'm taking 75 mg Zantax in the morning and 150 mg at night. I tried to stop taking the Zantax and everything that went down my esophagus felt like razor blades!
Did you have any of the other mtx side effects such as mouth sores or hair loss? The worst one is the kidney (or is it liver) damage it might cause.
The good news is that I am feeling lots better on 10 mg prednisone which I've been taking for about a month. I'm not so sore, I can move more easily, have energy and regained my enthsuiasm and ambition to do things (like the housework and yardwork I'd been neglecting for almost a year--I've been feeling yucky for almost a year now although I wasn't diagnosed until Jan 2010). It's a great relief to actually want to do things. I'm worried about being dependent on prednisone, but what can I (or any of us) do?
I so agree with you about explaining this condition to anyone. I "look" okay --which I guess I should be thankful for-- but it makes it hard for people to understand what this disease is. I don't feel like myself either, and I don't want to have to adjust to feeling this way.
It is better to focus on what we can do, and be grateful we can do these things. I congratulate myself on being able to complete the simplest physical therapy exercises, for example!
Hope you will be feeling better.
Take care, & hugs
freesia
freesia2010-07-03 19:15:10
Lyn, what is Panadol Osteo? Thanks. There are quite a few meds, etc, which I have not heard of yet...I'm trying to learn.
freesia
freesia2010-07-03 19:14:12Hi Freesia,
Panadol Osteo ( Paracetamol ) Slow Release tablets, 665mg.
These are stronger and have longer lasting relief.
Panadol is 500mg paracetamol....
Panadol Osteo is used for relief of persistant pain associated with Osteoarthritis.
Suitable for people with stomach ulcers, sensitive to asprin and NAIDS ( this is a small summary.)
maximum 6 tabs a day.
I now get a script from the Dr and get 2 packets (96caps per pkt)
They are available over the counter from the Chemist.
I find these help with the pain and flu like feeling of PMR..
Hugs to all, Lyn
LynM2010-07-04 03:36:28Thank you, Lyn!
Here in the U.S. I think paracetamol is called "tylenol" . I wonder if I could take it in addition to the pred, to help with pmr pain?
freesia
Dear All
I have found that 1500mg per day of Glucosamine helps my Osteoarthritis a great deal. It took about 4-6 weeks to kick in.
It was developed, or so I am given to understand, to help horses with fetlock and knee problems and I was warned that it did not work for everybody, but did for some, and they don't know why. What I do know is that is seems to be working for me. It does not cure it, but helps it along.
I also use tylenol along with the prednisone & mtx for overall pain which my pain management doctor and rheumatologist are aware of. If I remember right though you don't want to use over 4000mg per day of tylenol even if you aren't using pred or mtx.
No nsaids or aspirin with the methotrexate though. Thanks, russellcat. You're lucky that a lot of these meds and supplements work for you. I have tried glucosamine and after a few days it made me feel nauseous--disappointing because I know it works well for some people, and for animals, too.
I know that tylenol (paracetamol) can be toxic to the liver and we need to be careful if we use it.
freesia
I just saw my rheumy today and we discussed methotrexate
again, lol. She knows I am a fraidy cat when it comes to side effects. I may try it, but want to wait until I have my endoscopy so I know just exactly what condition my esophagus and stomach are in before I subject them to more torture.
Also, my rheumy told me there is an injectible mtx, so one can avoid the esophagus and stomach irritation issues. So that is something to consider although I wonder if there is a down side to injecting it? Anyone know?
freesia2010-07-15 15:16:47Hi freesia!
Don't worry too much about becoming dependent on steroids - it's not like drug addiction. Some people think there might be a problem with the way our body reacts to the cortisol we produce naturally underlying PMR in some patients so that using steroids is, in some cases, like replacement therapy and that is why some people never properly "get off" steroids. Just the same as in diabetes - the insulin replaces what your body doesn't make.
What glucosamine did you try? Some are made from aquatic sources and don't suit everyone. I think there are other sorts.
The official line is that NSAIDs (non-steroidal anti-inflammatory drugs such as aspirin and ibuprofen) don't usually have any effect in PMR and shouldn't be used along with steroids because of adding to the stomach problems. That said, I use ibuprofen occssionally alongside my steroids with no problem and it does help when I have a flare but it doesn't do a lot on its own except to blunt the pain a bit. Be careful with paracetamol as it is in all sorts of things (flu remedies) and it is easy to take too much - and it doesn't take much to cause irreversible liver damage. I believe it is possible to get a version which has the antidote combined in it - much more expensive needless to say!
Are you in the US? What steroid tablets do you guys get? In the UK you can have enteric coated pills in 5mg and 2.5mg - they are coloured red or brown depending on the dose. They are not absorbed in the stomach but further down the gut so there is less irritation of the stomach lining. I only use the white ordinary tablets in 1mg to graduate a reduction in smaller steps. I had some 5mg white tablets and thought I'd be good and use them up rather than waste them but they are enough to cause a sore stomach quite quickly for me.
Some people swear by a natural yoghourt a day to help with the stomach problems.
MrsE
Hi MrsE,
Thanks for your reply!
I guess that becoming "addicted" or unable to stop using steroids was something of a concern. Maybe it won't be such a problem. I think I am more concerned with the side effects of long-term use.
I've tried several different kinds of glucosamine. The one I have now is "an amino sugar derived from the chitin of shellfish". I never knew that! I thought it came from cows. There is also chondroitin in this capsule--it comes from bovine cartilage--so that's the cow part of it. I think that some glucosamine supplements contain zinc (?) and that is what makes people feel ill, but I could be wrong.
I really haven't been taking anything for pain since I started the prednisone back in Jan. of this year. That is good to know about paracetamol--I definitely will be careful if I ever use it again!
I am in the US. The steroid tablets I've gotten so far are simple white tablets which all seem to look the same, no matter which strength. I didn't know that there were enteric coated ones available! Wouldn't you know, I guess we don't have them here. I certainly would be a good candidate for those.
So many people here seem to swear by yogurt for stomach problems, I am going to try that.
thanks again so much, MrsE !
freesia
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