Posted , 13 users are following.
If anyone can shed some light. I have been on 12.5mg prednisone for about 8 weeks now and my rheumy wanted me to start methaxatrate. So i took the first dose followed the next day with folic acid. I have been sick since. Extreme fatigue nausea. Pain especially in my gland area like under my armpits in my groin area. Very bloated more than usual. Not aure why i would have such an immediate reaction . Feel like i have had a major setback. My rheumy is on leave not back for several weeks. Seeing the gp on monday. Would appreciate some advise.
0 likes, 10 replies
constance.de mirella60121
Posted
Sorry to hear of your difficulties Mirella. You will receive quite a lot of comments on this. It is not unusual to have quite a bad reaction when first taking metaxatrate - many do. Some improve after a couple/few days, some find they cannot ever take it. I was in the last group. Rheumy tried to put me on it twice, it failed each time (terribly sick, strong stomach pains, lots of trips to the loo, fatigue), second time it put me in hospital and they told me never to take it again.
You will find many that it has really helped,
so I'm afraid only you will be able to decide what to do. Don't let your Rheumy dictate to you. It's YOUR body!
Good luck! Hope you find the answer you are looking for.
Regards fr Constance. 💐
mirella60121 constance.de
Posted
karen28161 mirella60121
Posted
lodgerUK_NE mirella60121
Posted
Methotextrate is a steroid sparing agent.
It is a very good drug for arthritis and if you had developed LORA (Late Onset Rheumatoid Arthiritis) alongside your PMR then it is necessary.
I was offered most steroid sparing agents and refused all.
Now I AM NOT ADVOCATING that anyone else does this. We are all different and these sort of decisions are very personal.
If there had been a good reason to take any of them, then I would probably have agreed, but my reasoning was - I was on pred which is the oldest most powerful drug we have, all the side effects (83) are well documented and can be dealt with if they come along (and some of them did) Other drugs come with their own side effects - so I did the math and decided that as my body was having to cope with pred why did I want to add another drug plus side effects.
If the offered steroid sparing agents had done anything else to help the GCA go away, then that is a different kettle of fish - perhaps like TCZ currently being trialled (nearly finished) and looks promising.
So I decided No thank you - I would just stick with the pred my GP and Consultant where not happy about it although they they understood my reasoning but ultimately it was my decision and we continued as a 'Team'.
I emphazie I am not advocating that anyone follows my path, I am just telling you my story.
I did go into remission after 5 years of GCA and now into 7th year.
dea13 lodgerUK_NE
Posted
Hi , Happy to hear you are in your 7th year of GCA
Can I ask when 1st told you had it what Preds mg they put you on and for how long? And also, did you have any eye problems at all from the GCA :? It's very scary : Thanks Dea
lodgerUK_NE dea13
Posted
Read My Story on website PMR & GCA Northeast Support.
Guest mirella60121
Posted
Mirella, can you tell us a little bit more about your PMR/steroid history, ie were you actually diagnosed 8 weeks ago and started on just 12.5mg Pred, or had you been diagnosed previously and started on a higher dose? It can help us to help you more easily if we have the bigger picture.
What I'm wondering is whether you have been given a definitive diagnosis of PMR and started on a sufficiently high dose of Pred to get control over the inflammation in the first place. The usual starting dose is 15mg, but some people, especially those who are overweight, need 20-25mg. With the correct diagnosis (ie PMR not rheumatoid arthritis) and the right dose of Pred, and only tapering very slowly down through the doses, in most cases Pred will suffice.
Nausea is one of the listed side effects of Methotrexate, and it can affect the liver in some people - for that reason, hopefully the plan is that you will be monitored regularly via the appropriate blood tests. However, after the experience you have had following just one dose, if it was me I would think twice about taking a second dose. If Methotrexate is a must, having it injected can reduce the side effects.
Nausea is really debilitating so I hope it eases for you soon. If you don't already take it, a daily small carton of 'live' yoghurt may help.
mirella60121 Guest
Posted
My hands and legs its just horrible. My rheummy has not committed to my pmr. He believea i am too young as not in my 50s. He wanted to start the methatrate as he believes it is more ra although my symptoms are consistent with pmr. I have stopped the methatrate for now. He is back in a month time will speak to him them. thanks for all your help as it really feels good to know we are all in the boat together.
Daniel1143 mirella60121
Posted
I read through all of the replies, and rather than double down, I would suggest you read the comment from LodgerUK once again. My Rheumy put me on Methotrexate, and I stayed on it for six weeks. I'd did nothing for me, and when I read about its many side effects and risk to my liver, I shut it down immediately. Hard enough to deal with one powerful drug. Adding another was more than I had any interest to try.
Beyond that, I would agree with others that you're at a very low dosage of prednisone this early in the game. Seems your doctor may have been premature to add in Methotrexate
FlipDover_Aust mirella60121
Posted
I started on MXT back in Dec. The first time I took it I had some nausea, but it's not really been a problem since. I do believe I'm one of the 'lucky ones' in this regard!
I was put on MXT as I was stuck on 20mg of pred and feeling VERY unwell and not responding. I (may) also have fybromyalgia/myofacial pain syndrome. I'm now down to 7.5mg and doing really well.
I've also recently been put on Plaquenil, with a veiw to going on Tocilizumab, which is purported to be 'the next big thing' in treating GCA and PMR.
I'm not sure why your rhuemy wants you on MXT if you are on 'only' 12.5mg, and I assume, reducing.
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