Drug worrier

I’ve been diagnosed with Seronegative Rheumatoid Arthritis but worry about side effects for Methotrexate don’t like the fact my immune system can be affected, can’t think that is good but painful walking. Can still play table tennis a little and swim. I have s good diet but don’t know what I can do without drugs

[RosieA]

I too am seronegative and like yourself have prided myself on good diet, exercise etc and although anxious about MTX and other immune suppresants a good read of literature around RA leaves one in little doubt of the impact of not taking the necessary drugs. Four months down the line my joints are beginning to settle back to how there were, my fatique is vastly reduced and I am slowly getting my life back together. Friends are beginning to comment that I am looking so much better. Without taking the meds I think my RA would have spiralled out of control, affected joints suffered irreperable damage, let alone the impact on the rest of my life. Having said that, it has been a journey of adjusting to the drug, pacing myself and taking a good look at what I could 'cast' out of my life that added unnecessary work / stress. I do have to be careful about the impact of other infections as my white blood count is now low but I carry antibacterial gel with me and avoid those obviously ill. The NRAS website is a font of knowledge and your specialist nurse / rhuematologist should allievate all your concerns. Hope this helps a little.

[Hidden]

I too am s- negative. I just took methotrexate for the first 3 years and had no problems. I didn’t get any colds or viruses in fact had less time off work because I didn’t get the “flu” as often ( now know this was a symptom of RD) methotrexate helped with my stiffness and enabled me to participate in life. In fact I was quite active . Last February things changed I’m on methotrexate still but it’s not enough tried and failed other demards now on a Biologic which was just starting to work ... got a chest infection (3weeks now) so off the meds can’t wait to get back on them. If you don’t try the drugs you won’t know if they will help. We are all different works for some not for others.if your worried about medication chat to your Rheumatologist. If you have a good one they will talk you through all your concerns. Most of my knowledge of RD has come from this site. I often find the people on here’s knowledge is much better than the medics as they live with it and understand how it effects all parts of our lives

[AgedCrone]

If your Rheumatologist prescribes MTX it really would be wise to take it.

Many of us here take it for years & lead a good life with very few problems.

Your immune system is already affected....that is why you have symptoms.

Mtx will hopefully calm things down & your walking will return to normal.

But do give it time to work....it is not a two week wonder- it could take anything up to 6 months, but for a lot of us it works a lot faster.

Please stop worrying...no stress is Numero Dos in the RA self help booklet.. Numero uno being take your meds.

[medway-lady]

Being realistic is the first thing, it won't get better and the medications are never fun but do enable most people to live normal lives. Second thing more people die from taking Paracetamol its 8 on average than RA drugs every year according to my consultant and most of us swallow that without really thinking about it. I can add that, because I took a prescription drug one so common that it beggars belief but it damaged my kidneys. Its also an OTC one found in every supermarket so I was lucky that the regular blood tests we all have picked up the problem before it killed me. It's the same with MTX its subject to regular blood testing so a problem will be picked up and it might make you feel a whole lot better.

[Morigan]

Hey. I have been diagnosed in spring 2017 and I was also very worried about taking mtx (still am). But it has helped me a lot. Was in doubt if it was working at first and it took me a year to feel much difference but I am now in remission for about 8 months and only have very mild flares now and then and I was sick a lot less then before taking it. I don't have any stiffness anymore and almost no fatigue which was the best thing for me as I always felt so tired and out of energy.

My blood count is very low atm tho and I have to stop taking mtx for time being. Not sure what's next.

[Mmrr]

I'm seronegative too, the best chance of preventing joint damage is to take DMARDs prescribed by your rheumatologist.

Yes, some people will experience side effects, but not all, but all people with untreated RD will experience joint and possibly other health issues.

There are lots of DMARDs available. Good luck.

[nomoreheels]

As an oldie at 11 years on MTX (though seropositive) I can say I’ve had fewer colds than I've ever had, no flu, in fact nothing that has laid me low as it did before I was diagnosed. Common sense hygiene & daily Vitamin C by fruit is all I’ve done that I can think of, apart from giving sneezers & coughers a wide berth! I can honestly say that it's not affected me negatively, only had positive results, aside from manageable stuff. The thing is your immune system is overactive anyway having RD, it needs bringing down a peg or two so sDMARDs & bDMARDs do just that. By taking the meds we're trying to amend what's gone awry not the other way round. You probably know they're not fast acting so patience is needed.

Carry on as you are. Exercise is so helpful at keeping those joints moving & as you're helping yourself as well with eating healthily then I don’t think your Rheumy could ask for much more. Only thing I can think of that you’ve not mentioned is limiting alcohol intake, or stopping until you know how things lie, & if you don't smoke you’re doing fine as you are. If he feels you need meds & you trust him & work with him then all's well. He has your interests at heart, you have the choice not to take his advice. It is a big change, especially if you've not needed to take specialist meds prior to diagnosis, but it will become second nature & once you see results maybe you'll feel differently. I'm not going to lie, Rheumy's don't have crystal balls, they don't know which meds will work for us, that's for our body to determine but hopefully it won't be a long trek to bring you under control & you get to be more like you'd wish to be, just with RD in your life.

[helixhelix]

I imagine we all worried....it’s not a fun thing to have to face. But the alternative is far far worse. MTX doesn’t seem to have made a huge difference to my immune system. I’ve had no infections or colds in 10 years. Be sensible and wash your hands and you are likely to be fine.

One suggestion is to read the patient information leaflet in a packet of paracetamol- that’s quite scary too.

[Rosekerr29]

Was on mtx for a couple of years... Now I'm on Humira... was the same as you but in all honesty I coukdnt function without my RA meds...

[Monkeysmum]

Hi. I’ve been on methotrexate for about 18 months now, including two winters. One of my worries before starting methotrexate was definitely the effect it would have on my immune system, as I suffered from frequent colds and viruses, especially over the winter months. Over the last two winters I have had no colds at all (touch wood!) so things seem to have improved if anything on methotrexate. My rheumatology nurse once explained it to me by saying that before treatment my immune system was ‘chaotic’, whereas now with methotrexate it was better controlled, and could work more effectively. Hope that helps put your mind at rest a bit.