As per my post on Thursday I have had my bloods and X-rays done should get my results next week. The new Rheumy has already suggested I go on Methtexrate and Folic Acid as soon as my results are in. I really really am petrified as I have read so many things about this medicine and I don’t feel I want to take it. Are there any alternatives or could I just take Pred. I know I will have to discuss it with him, but would like to know in advance what I am talking about. I am such a worrier and have worked myself up into a state about it. Plus I take 40mg of Omprazole a day for Barratts Osephegus and I’ve read that Methextorate and PPI’s don’t go together. Sorry about spellings.
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Please don't latch on to everything you read on the internet without being able to understand it all. Taking MTX and a PPI may mean that the blood levels of the MTX get a bit higher - but that isn't a problem at the low doses that are used in rheumatology. MTX is also used in cancer treatment but at very different doses that are toxic in themselves - if a PPI increases those levels it can be a problem. But they are doses that are 10 times and more the dose you will be given.
If you have an inflammatory arthritis the long term effects will be joint damage. MTX is what is called a DMARD, a Disease Modifying Anti Rheumatic Drug, and it reduces the adverse effects on the joints of the arthritis. Pred doesn't do that and as the arthritis progresses you may need more and more pred as well as developing joint problems that can be quite disabling.
MTX is the most used starting drug for inflammatory arthritis in the world. We don't like it being used in PMR because PMR is not an inflammatory arthritis and MTX only works in PMR for a very small group of patients although it DOES work well for them. But your doctor is saying start it straight away IF the tests give the results he expects. It is the best for you. If you should turn out to not be able to get on with it there are other options but few are as good as MTX. Pred on its own certainly isn't a good choice.
Thank you so much, I feel better after reading what you have written. My mind was racing and I thought I’ll never be able to feel comfortable with my young grandchildren in case I catch something as my immune system will be so low. I know most of the drugs used in the treatment of RA leave you immune suppressed. But surely so many people live with this, how worried should I be? My anxiety is sky high.
There is quite a lot about MTX in the FAQs and MrsNails wrote quite a lot. She is on MTX and does a lot with her grandchildren without worrying too much about it.
According to the rheumie nurses just being on MTX doesn’t cause you to be immunosuppressed, guess depends on dose but they are used to heavy duty drugs . I’m on a low dose and not in contact with little people to be fair but haven’t had a cold since 2017 coming back from India , even when husband had a horrid cold/flu thing over Christmas I was fine. Not had Covid as far as I know. I think it’s better to have whatever autoimmune thing you have to be controlled with prednisolone or whatever and feel well. Probably lucky I know x
I’ve been on MTX since August 21 and off Pred 14 months . Diagnosed PMR 2015 now diagnosed seronegative inflammatory arthritis but honestly still think it’s PMR. Was fine on almost homeopathic doses of prednisolone for years but could never stop without symptoms recurring, MTX has allowed me to be off Pred - I’m on now 12.5mg/10 mg MTX per week and feeling fine, is it any better than being on about 3mg of Pred I’m not sure but I I can eat carbs without putting on weight and I think adrenal function is ok now and skin isn’t so thin and dry. I think MTX is worth trying. Happy to send you a personal message tomorrow 😊
I would say to your rheumy how agitated you are and that it could affect you mentally, as you are so petrified and is Methotrexate one hundred per cent necessary.
Sulphasalazine, leflunomide, and a whole range of biologic drugs but they aren't first line, Methotrexate really is the place to start and there are good reasons for that. You need to allow the rheumy to get on with it. Inflammatory arthritis isn't the same as PMR where there is only one option, steroids. In inflammatory arthritis the doctor chooses what they think will be most suitable for the type of arthritis.
I too was petrified to start MTX after getting stuck at 9mg of pred for over a year. Come to think of it I was also dead against starting pred when I was diagnosed with PMR. Had I let my fears take over the advice of my GP and rheumy I would not have benefitted from the relief each medication has provided me.
For me, making decisions out of fear doesn’t make for good outcomes. With MTX I was assured by my rheumy that unlike pred, I could stop the medication at any time. To my surprise, after about 10 weeks on MTX I started feeling better and then was able to taper my pred dose down further without any side effects from the MTX.
I did have to hold my MTX dose a few weeks a few times since I started it Jan/22 mostly do to having to take antibiotics for diverticulitis, and symptoms returned…..so I know the MTX is helping. Makes me wonder if I have other autoimmune issues that are being helped by taking it.
I too have grandchildren (including 3-year old twins), so I am careful especially in the winter when we are inside more and sick bugs are floating around. It means masking up, washing hands frequently and sometimes choosing to delay visits, and their parents understand my health concerns.
On a practical note I would hope you’re rheumy starts you on a lesser dose of MTX (say 10mg) and then increase as need be. Mine started me at 25mg off the hop and we decided to lower it to 15mg this past spring after a bumpy winter. I’d also suggest the weekly injections which are said to result in less side effects compared to oral medication. Lastly I take 5mg folic acid 6 days per week. I trust your rheumy knows all of this and will provide you with guidance and direction. They will monitor your bloodwork regularly while on MTX as well.
I’m not sure if my response will ease your mind at all but just wanted to share that you are not alone in your fears. Bring a list of all of your relevant questions so they can be addressed…..this certainly helped provide me with the assurance I needed to move forward with a plan I could live with. All the best.
thank you so much PMRC Canada yesterday I was in a very dark place, now due to the wonderful people on this forum I have changed my attitude completely, I am still afraid but am going to start this medication with a positive attitude. After all I can’t go on like this without meds. My previous rheumy took me from 2.5mg pred to nothing these last few weeks have been horrendous. I understand what you are saying about the grandchildren. Do you wear a mask when going out? Your input is invaluable to me as is everybody’s in this group. Thank you so much.
I usually only wear a mask around those I know to be ill. For instance hubby is currently contending with a very sore throat and now a tickling cough. So I’ve put into practice what I learned during Covid….wear a mask, distance and wash hands frequently. We are fortunate to have enough space that he can be banished to the family room or a bedroom upstairs. Told him to stay out of the kitchen, I’ll provide the meals and slide him a plate 😉
I have also chose to wear a mask while travelling on a plane and while in the airport.
No wonder your feeling dreadful….the golden rule is the lower the slower (taper wise).
hi PMRCanada! Yes, I too wear a mask if anyone comes to the door. Or if I am shopping. Last October , around 6pm went to my local supermarket, very few people in there.. Bought 3 items, was in there for maximum of 10 min. Returned to car and realised I was not wearing my mask. Silly me. I thought, I will be ok. 2 days later - Covid! Three weeks of hell and lost 12 lbs in weight. Lost my taste and smell due to long Covid which only returned to norm in May. Keep strong!
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