Feeling a bit scared ....rheumatologist on monday

I know someone with RA. She was 35 when diagnosed.
She is on immune suppressants and walks miles. I am seriously impressed as would never have guessed she had it. She gets sore easily and needs to rest a lot but lives a relatively normal life.
Don't despair OP x

How are you doing now?

I know exactly how you are feeling changed, it's a dreadful feeling and hard to be positive. You will get better but it may take a little while. You might get offered an intramuscular steroid injection. If you are, take it, it will definitely give you the boost and hope you need.

Thank you for your kind words about my daughter. She is doing well and her symptoms are well controlled on the medications. She got a scooter for her birthday and ran me ragged around soft play the other day, she has no mobility problems at present! The constant worry is the thing that gets me but overall she is doing well and doesn't know any different x

Sounds like you have a full support network in place, be sure to rest as the fatigue can be a struggle. Have you considered swimming as an exercise that doesn't put strain on your joints? Or Yoga? x

@Tiredflower I'm sorry to hear about your little girl. I hate to see kids affected. Omg know of you are aware of it but ICAN the Irish children's arthritis network is an amazing charity that is 100% volunteer led and allows kids to just do kid things as well as giving families a bit of support x

I'm pretty sure I can drink on the drugs I currently take, sulphasalazine and naproxen, but in moderation which is always advice anyway. I do know the sulphasalazine makes your wee bright toxic yellow which takes some getting used to! Because it's coated as it can cause stomach issues, I think.

I don't know about methotrexate for but the drugs I have taken nobody has told me not to drink.

Hi,
I have psoriatic arthritis and was diagnosed 3 years ago, just after getting pregnant with second child. I was on sulphasalazine when pregnant which didn't do much for me, as I throw up so much when pregnant that I could never keep enough down to be effective! But I was also given steriod injections every 3/4 months which were wonderful. My rheumatologist wanted to start me on methotrexate immediately after having my baby, but I wanted to breastfeed! We compromised on breastfeeding for 5 months and then starting medication. I was quite sad at the time as I'd breastfed my older child until she was two, but now I'm glad that I did it as it took me a long time to find the right balance of medication. Methotrexate takes about 3 months before you actually feel any difference, and after steadily increasing my dose every few months, and there being very little difference, after a year my rheumatologist then added cimzia ( a biologic) to it and the difference was immediate! I am now in no pain and joints are all the same size, though some fingers will never bend again! But it is wonderful feeling normal again and not dealing with pain every day.

I was terrified of the drugs after reading about all the side effects, but it's not been too bad. The methotrexate wipes me out for about 12 hours after taking it, but this is getting slightly better. Folic acid is the key to methotrexate! I take 5mg every day except my methotrexate day. And the only issue I've had with the Cimzia is the trauma of having to inject it! And actually, I just make my husband do it for me!

Good luck with everything! Xx

Do the consultants recommend you don't drink (or to excess) with RA regardless of which drugs you are taking or doesn't it make any difference?

Hi my Ra went away in both pregnancies I stopped my medications almost straight away. I was taking Sulphasalazine which is safe in pregnancy and breastfeeding. Also the steroids prednisolone are okay too, although not a long term solution. When my Ra started again I went back on the steroids first by infusion and then both injected into the worst joints and orally. This got my through until the Sulphasalazine kicked in again. The morning stiffness is a part of the RA, steroids would certainly help with that.

I was always scared of starting methotrexate and have not taken it so far. My 2 year old was diagnosed last year with Juvenile arthritis and she is on methotrexate which I inject for her weekly. She is now doing really well so my opinion of the drug has changed greatly x

If you do go on to methotrexate give yourself a break for a few weeks. I take mine on a Friday night and struggle Saturday. The first six weeks were awful but it gets better. I've been on it 2 years now. One thing I will also say alcohol be careful. The liver copes with methotrexate but if you introduce alcohol it may cause issues. So be very careful especially in the first six weeks.

Oh and you will need a tap in your veins in your arms... 2 weekly blood tests to begin with...

It's great you have a supportive partner. It's frightening when your given a diagnosis, your mind works overtime. I was given a lot of leaflets to read. They made me so depressed I binned them. I remember lying in hospital feeling as if my world had ended, watching the nursing staff take my baby for a walk in her pram (they let me have her in with me which was amazing) when a girl was admitted for a routine check. She was gorgeous, all tanned and looked amazingly healthy. She came and spoke to me and said she had been me a few years previously. It was her that gave me the hope I was looking for, I vowed I would be like her. She told me that although it's very hard, a positive attitude helps. I just couldn't see past the next minute and thought the pain would never go away. The following summer I was tanned and healthy, chasing after my boisterous baby girl on a beach in Sicily.

I have no history of RA in the family and was told by my consultant that it's not entirely uncommon for a woman to develop it within a year of childbirth.

Hopefully you don't have to wait too long for your scans changed

@Alaskan
My RA disappeared in the second trimester for DS1 and flared back immediately after the birth.

I didn't go into remission for DD2 at all and just managed to get through the pain as best i could.

I take roactemra injections once a week btw. Changed my life.

I have RA and systemic arthritis since I was 4. I'm 36 now. I've had 2 kids and got through life and do all the things people without arthritis do. But it will be a case of getting your medication balanced, and then learning how to manage your arthritis. Losing a bit of weight will help- every additional pound of weight is equivalent to about 4 pounds in terms of pressure. I had to learn to be adaptive when it came to the kids.

're is usually in flare cycles and there will be times again when you feel ok . If you have any questions ask us. And we now have an auto immune board in the health section!

Hi changed.

I take methotrexate, by injection, every week for psoriatic arthritis. It has helped, not a miracle cure but definitely a big improvement on my symptoms. I am also trying one of the newer biologic treatments called cimzia. Whilst they do help with some of the swellings etc (my big toes almost look normal!) I still have take pain relief most days, and always at night to allow pain free sleep.

I can understand you are concerned, as a fellow sufferer I would certainly suggest that the benefits of taking the medication outweigh some of the side-effects. And try not to beat yourself up too much about stopping breastfeeding, your son needs you to be a fit and healthy mum more than he needs breast milk. You've managed four months which is a fantastic start for him. You now need to put yourself and your health first.

Feel free to pm me if you have any questions or just want a moan

Good luck changed. You will start feeling much better once you start medication.

Good luck with the medication OP, I have a friend with RA and it has changed her life for the better