Newly diagnosed

[Tiggerlkr]

Hi, I'm 47 and have recently been diagnosed. Am on 25mg of methotexate per week as well as various painkillers for another medical condition. They have just started me on oral steroids as the injection didn't work. Is it normal to be so tired and nauseous all the time. Tried to explain to family how I feel but am sure the are getting fed up of it. I can't wash properly or even brush my hair, not sure what to do can't work at the moment.

[Shazz10]

Hi tiggerlkr and welcome.

I am so sorry to hear that you have been diagnosed with RA but glad you have posted here as you will get great help/advice/comfort as I know I did.

I'm 48 and diagnosed with RA three months ago. I couldn't raise my arms to brush my hair or get up from a seating position without help or lift a cup with one hand and was in constant pain all over. 40mg of steroids immediately reduced the pain but it took 5/6 weeks of steroids to gain my mobility back slowly but surely.. I'm happy to say 3 months later and having been on 15mg of methotrexate for only a month I am 'almost' pain free and fully mobile. I'm only on 7mg of steroids now and am fit enough to return to work in Monday which I can't wait for. So there is light at the end of this tunnel. I have no idea how suited I am to methotrexate or if it's just the steroids that have helped or a of the 'flare up' has just subsided but I can't wait for my next rhuemy visit to see how my bloods are doing and to ask lots of questions...I was so glad just to be prescribed something last time that I didn't ask much.

The fatigue seems to be very common and was my biggest hurdle to be honest and still is. I think the key is to do what you can when you can but to rest when your body demands it..no matter how inconvenient. As for the nausea that's possibly the methotrexate. I had it too and had to be prescribed anti nausea meds to take the day before and the day after I took mtx and they worked great. Try to drink lots of water in general and especially when you take the mtx is what I've been advised and seems to work also.

I wish you lots of luck and you will definitely get great support here.

Sharon 🌸

[Tiggerlkr in reply to Shazz10]

Thank you for your reply,it's nice to hear that the medications do work. Never thought of posting on something like this before but am glad I have now. Good luck with your return to work.

[Shazz10 in reply to Tiggerlkr]

Thanks..really can't wait to go back and hope I can handle it am staring with part time and building back up to full time as like I said fatigue is still an issue.

Everyone's really helpful here and you can be sure someone else has experienced whatever it is you might have a question about. And there are people from all the world and at all stages of their RA journey. Along with the physical issues you may encounter for me getting support here really helped on days that I couldn't muster up my positive mental attitude which is as important as any drug we will be prescribed.

Best of luck 🌸

[AgedCrone]

Make sure you take Folic Acid...5mg every day except Mtx day( have to get scrip...cannot buy OTC) & make sure you drink plenty of water/squash etc.

Both seem to help with the nausea....the tiredness seems to come & go- some days you can hardly raise a hand ...the next you feel you can clean the whole house...but don't! Just learn to pace yourself......we are all different.

Hope everything settles for you!l

AC

[Tiggerlkr in reply to AgedCrone]

Am taking folic acid 5mg for six days out of seven. Will try drinking more water as I know I haven't been drinking enough. Managed some housework this morning also managed to plan family meals for the next week. I am lucky as my husband does a lot for me,also my mum takes me for coffee once a week.

[AgedCrone in reply to Tiggerlkr]

Take it easy when you can....it's a devil if a disease & you need to take it at your own pace.

[chrischarriot]

Hi Tiggerlkr,

I was diagnosed about 10 years and remember very well how difficult it can be to adjust to the meds and some of the side effects while dealing with work and family life.

Ist, remember that your treatment is ongoing and will develop. It can be trial and error for quite a while as RA is a complex condition and varies from person to person. Hopefully you will have doctors who believe " treat the person 1st, the condition 2nd" as this enables treatment to be developed around your day-to-day experience. I had major problems with nausea taking methotrexate in tablet form, I basically could not eat for 2-3 days after taking it. Thankfully, my doctors switched me to injections, my nausea is virtually non-existent and I can eat a Sunday roast again.

2nd, pain can be exhausting, even when you are just sitting in front of the TV! Sorry, you need to accept this, especially if you want to return to work. Learn to recognise the signs and cycles and develop ways to compensate and cope with it as best you can. If you need to take some time out during the day, do it. Discuss this with your employer, would they rather give you some time to rest during your working day or lose more time with you out sick? It takes time. With many types of painkiller, you need a regular dose at the level that lets you function at your best. Do not think that you can take the lowest dose day-to-day and take more when your pain is worse. It can take at least a week at the highest dose to have a positive effect. One of the best ways of dealing with pain is distraction. Hobbies, family and social activities, and work, but do not rely on work .

3rd, this is YOUR condition, take control and learn! Talk to your doctors and specialist nurses first, if you need to, dig your heels in and demand info, most of the health care professionals in this field care and will give some extra time if asked. Use forums such as this, read information readily available from specialist organisations, these should be accessible at your hospital rheumatology unit. NRAS also run local support groups, consider using them, they can be an invaluable support.

4th, concentrate on the good days! Ignore the negative things your brain may tell you on the bad days, you know that you can and will deal with this condition and, hopefully get better.

[Russell290656]

Hi I`m 61 and was diagnosed with RA 4 years ago and unfortunately it`s normal to feel tired and nauseous, I`m sure my family think I`m putting it on most of the time.

Been on MTX plus pain killers for two years now, with odd steroid injection which is great for a couple of months, still managing to work, hopefully for a while yet.

Hang in there it`s not the worse that can happen.