Husband newly diagnosed and questions about medications?
Hello,
My husband has just been diagnosed with Rheumatoid Arthritis (Seropositive) and it due to start treatment soon. He is in his late 40's now but has likely had RA for years now and they whole thing being rather insidious until a more severe flare up this year affected his ability to walk.
In many ways he is doing ok at the moment still able to go to the gym and play golf but he has faily significant damage to one ankle and one one wrist which we were told would likely fuse in future, he has developed some nodules and he possibly has some cardiovascular effects from the disease.
I am worried about him and what the future holds for both of us. I suffer from Chronic Migraine and so have some idea of what it is like to live with Chronic pain and with a condition other people don't always understand. However I also know that the effects of RA can be very far reaching and disabling and that the medication used to treat it can also bring its own issues.
I just don't know what to expect. I had a relative by marriage who had RA very severely who recently died in their mid 60's of pulmonary fibrosis related to either the medications or the disease itself. We think my husband's aunt had RA although we don't know for sure, she was disabled my some form of arthritis in her 40's and was no longer able to work. She died of Leukemia in her mid 50's over 20 years ago now.
These are quite scary possibilities to have hanging over us and I worry that he is just going to get sicker and sicker with ever stonger medications and side effects. I am also really concerned about the impact RA may have had on his heart and cardiovascular system, I have read that for men with RA risk of cardiovascular events are higher and one of the reasons life expectancy can be reduced in sufferers. This really disturbs me. He is otherwise quite healthy he has never smoked, eats a largely vegetarian diet and is active when he can and has never been overweight or smoked, he does drink alcohol but only moderately.
Medication Question:
His two treatment options are Methotrexate and Sulfasalazine, the consultant gave us leaflets and more or less left it up to my husband as to what he would take although I got the impression that the consultant prefers Methotrexate as it is also a treatment that you have to have been on in the UK (NHS) to access other treatments if these aren't enough, Biologics I imagine.
Reading the leaflet and looking online both medications have quite scary side effects but the Sulfasalazine seems milder and as if he wouldn't be so immunosuppressed on it. However looking at it from a cardioprotective point of view the Methotrexate seems like it has the stronger effect at protecting his cardiovascular system which may already be damaged (he has high blood pressure). However some of the side effects of Methotrexate are quite frightening and then there is the hair loss which my husband is keen to avoid. Ideally we could have had another appointment to ask these questions to his consultant but we won't see him again until January after he starts treatment as it will be his GP doing his prescriptions and blood tests.
Any input, experiences or info on these medications would be very welcome.
Sorry for such a long first post and thank you for reading.
I'm sorry to hear your husband and you are going through this. Thank you for taking the time to share your concerns and ask these questions. No message is ever to long here, so please don't apologize. Methotrexate has been around for a very long time, decades, and there is a ton of information about how it helps those with RA. The side effects I also admit are scary, and one of the reasons why I was also scared to take it. This is a common one many in the community talk about. However, it has helped so many and even has put people in remission. The only way to know is bite the bullet and try. Like my rheumatologist once told me it's better to take something than nothing. Mtx and sulfa the other one you mention are usually prescribed together as the sulfa sort of protects people from the Mtx as well. There are other tests you can do if you haven't done them already which show the level of inflammatory markers. There is usually a reason why doctors prescribe certain medications over others and this is typically the first step. If specific inflammatory markers are higher Mtx can help lower those and thus protect the body from further damage. You should ask any other questions to the provider to, you have the right to. Also many have found help via integrative therapies in combination with taking medication. You may want to look into that as well. I've included articles below that may help too. Please feel free to reach out again with any questions or concerns. We aren't medical providers, but help as much as we can from the perspective of actually living with RA etc. -Effie, team member\
https://rheumatoidarthritis.net/treatment/methotrexate
https://rheumatoidarthritis.net/stories/methotrexate-journey
Hi
. First, let me say, as the husband of someone with RA (my wife, Kelly Mack, is a patient leader here), it is always great to hear about/from supportive spouses. I'm sure it means a lot to your husband that you advocating on his behalf and seeking out information.
Even though I'm in the U.S., I'm familiar with the step therapy requirement in the U.K. that would require one of the two meds you mentioned to be tried first. As Effie said, methotrexate is one of the longest standing medications for RA and many have used it effectively over the years. Of course, it is not without its potential side effects, but, as you noted, the impact of uncontrolled RA can be severe. My wife, Kelly, was diagnosed with a severe form of juvenile RA at age two, 45 years ago - before modern treatments with the damage to show for it. She has used a wheelchair since her teens. Note: back then doctors would not use methotrexate for children. She eventually used methotrexate for many years and it slowed the damage until she eventually switched to biologics. I see Effie share some info on methotrexate. There is quite a lot of research on the benefits of early, aggressive treatment for RA, such as here: https://pubmed.ncbi.nlm.nih.gov/21517638/.
Your concerns about extra-musculoskeletal RA issues, such as cardiovascular is understandable. It is important to get coordinated, complete care. Kelly has seen both a cardiologist and pulmonologist and has other specialists (orthopedists, a podiatrist, a dermatologist - to name a few). Kelly has been fine on both the cardiovascular and pulmonology front, which shows that extended RA does not have to mean these issues occur, but it is important to be vigilant, as each case is different. Hope this information is helpful and please feel free to keep us posted on how things are going and to ask additional questions - this community is here for both of you. Best, Richard (Team Member)Thank you for the reassurance about Mtx, it is overwhelming but he does need to take something to try and prevent further damage and illness and on the NHS in the UK I don't think it is possible to progress to any biologic drugs before you have been on Mtx so that probably is the sensible option. The hospital he is with has a helpline for RA patients but it is understaffed at the moment but we could also try and get more medical answers via his GP if we have no luck with the helpline. Thank you for responding Richard and for the solidarity! Your wife is also lucky to have someone who takes an active interest. I do want to be as supportive as I can be. I don't know how long my husband has had RA it could have been years but the progressions seems to have been very slow and I think his diagnosis pattern is quite typical for men who have been blaming their synptoms of sports injuries and the like for a while before seeing a doctor. Thank you for the information on the medication and treatment. I think he probably would be best to start on the MTx although it is his choice, I think that is what his consultant favours and it would mean he could start a biologic more quickly is needed. I will also ask about further monitoring of his cardiovascular issues in light of his diagnosis.
Thank you both for reading and replying, I think it also just helps to write it all down at times and get it out of your head a bit!Hi
. You are very welcome. It is a good sign that it seems his progression has been slow and I suspect you are correct about methotrexate enabling a quicker move to a biologic. If sulfasalazine does not work, the NHS may want to go to methotrexate (I have family from England and we have a number of community members from the U.K. as well). I thought you might also be interested in this video Kelly and I made on caregiving: https://rheumatoidarthritis.net/video/video-caregiving. Although I'll note the your husband's situation is quite different from Kelly's and, hopefully, with treatment his RA will never advance like hers. Best, Richard (Team Member) Hi Janet, you're most welcome. It would probably be best to get in touch with his GP or anyone who is prescribing the medication. The hotlines are a great resource and we have them here in the US too, though sometimes going directly to the source when first starting can be more helpful. Every doctor is different some have patients start with methotrexate as it's considered first line in the treatment plan and others feel a biologic alone or in combination with MTX works the best. You won't know until you try. Best of luck, hang in there. -Effie, team member
