New diagnosis

[DogsMakeLifeGood]

Hi there, I got I'll from glandular fever in my late teens and have been given different diagnosis over the years and now I have been told I have rheumatoid arthritis. I'm hopefully going to start sulfasalazine and just wondered has this been successful for people? I've been so fatigued for so long, changing jobs until 3 years ago I couldn't continue, I'm now 39.Does sulfasalazine make the fatigue go away? Just wondering what life might be like? I have given up so many plans due to being unwell and had accepted life but now just wondering what life is like living with rheumatoid arthritis and medication?

Thank you so much, I really appreciate it. Wondered if I would have normal energy or is it a case of still managing it?

[Deeb1764]

the journey you are on will be very personal so comparing won’t really help BUT some on here have been great on this drug and others not so good. Don’t expect miracles as the drugs can take 12-14weeks to kick in BUT don’t stay silent if feeling worse or not getting something out of it. Many of us have had many different drugs to find the one for us!

Fatigue oh wow could write a whole chapter on this. I would say it’s my worst effect but others once meds kick in it slows down.

The forum is great for checking things out and asking what you might think is a daft question in a safe place. NRAS are great to and have loads of downloads on the meds and effects so worth looking at their site too or calling if feeling frustrated or worried too.

I had glandular twice in late teens which set off a load off issues too.

Good luck 🤞

[DogsMakeLifeGood in reply to Deeb1764]

Thank you I've ordered some booklets from their website. Ok it's kind of reassuring to know it still is a journey. The rheumatologist said you can get pregnant now which was a lot as I'd made the decision not to as I just am not well enough to consistently care for a child and I've had therapy to accept this and thr limits of my illness. It put me in a tailspin as he said I'll cure you and I thought why didnt you try this in my 20s or 30s I'm almost 40 now and made lots of decisions based on having an illness that I have to pace. Glandular fever is the worst! It seems to spark off conditions in so many.

[Deeb1764 in reply to DogsMakeLifeGood]

There is no cure for RA what a crass thing to say personally to you after such a journey as well. What you need is calm restored so you can get on a good path 🥰

[J1707- in reply to Deeb1764]

Spot on Deeb

[vonniesims]

I too had glandular fever late teens and have spent my life more tired than everyone else

[DogsMakeLifeGood in reply to vonniesims]

Have meds not helped the fatigue?

[Deeb1764 in reply to DogsMakeLifeGood]

For me no but fatigue and RA almost go hand in hand so it’s learning pacing and resting which is an art form in itself!

[vonniesims in reply to DogsMakeLifeGood]

Yes. Rarely get it now. I was always easily tired from teenage to 55 when I was diagnosed! Methotrexate and a couple of different biologics have eased that. I have also learnt to pace myself

[DogsMakeLifeGood in reply to vonniesims]

Thank you both for replies. Its interesting that there is still pacing involved. The rheumatologist got so excited that he could cure me and it made me think why didnt u try this in my 20s or 30s I've adapted my life so much and made big decisions based on my limits.

[JenniferW]

You poor thing, glandular fever is so nasty.

I am afraid most of us still find ourselves having to manage our fatigue even with successful medication, but the good news is you will probably have more than now. Before meds I was going down the stairs on my bum to save energy and regularly off work sick with fatigue. I am now still working at fifty, albeit with reduced hours, and I have a social life even if I am a bit on the flaky side.

BTW keeping your vitamin levels at a decent level will help too, some doctors talk about this and some don't, so if they haven't mentioned it, initiate a discussion about vitamins D, B, iron levels and magnesium , the rheumatologists are more switched on than the GPs on this front.

[DogsMakeLifeGood in reply to JenniferW]

Thank you the rheumatologist made out that I would be cured but he tends to overpromise. I was finding it hard thinking why didnt you ever try sulfasalazine before in my 20s or early 30s as read its commonly used or try one of the other drugs. I feel like I had changed my life so much changing Jobs from teaching to teaching assistant, my hours and then not working and making the decision not to have a child as I couldnt consistently look after them and i had accepted this due to the limits of being unwell. The rheumatologist said now you can have a baby and that has been hard as I'm almost 40 and had therapy to accept my limits. Suddenly thinking I'm going to be well made me think I've missed out on so much and it's a bit late now if you had tried this in my 20s I think my life would have been different. I think knowing that its not all miracles and you still have to manage illness in a way makes it easier to accept the decisions I made. I was put on hydroxychloroquine and azathioprine before and they never made a difference that I noticed and they never really did anything else just occasional prednisone so now him trying all these drugs and saying I'll be better is a lot.

[Ascidian]

Sulfasalazine helped a bit with my pain and swelling, but not really with the fatigue. After a few months methotrexate was added, and that has given me a whole new lease of life. At first there was only a further modest improvement, but after about 11 months I suddenly realised I was almost bursting with energy. Even my husband spotted the difference. Don't wait too long to go back to the rheumy if you don't have ANY improvement after 3 months or so, though. Good luck.

[DogsMakeLifeGood in reply to Ascidian]

Wow I think he wanted to do sulfasalazine first as he knows I didnt have a child due to not having enough energy and he said on this you can have a child! It's been a lot as I'm almost in my 40s and for me I've accepted it with therapy so it was a lot saying I can cure you now, wish he had tried it in my 20s or 30s. I think methotrexate might be added later but he was going on about now me having a child but it's not that simple I think I have moved on mentally after a long time making that decision based on my life how I've been energy wise since 18. I think if methotrexate is added and it helps I need to not regret my decisions and what my life could have been if these drugs I had been told about earlier but be glad of anything more I can do going forward.

[Ascidian in reply to DogsMakeLifeGood]

Sorry, I meant my post to be encouraging, but I'm not always very good at expressing my thoughts. What I should have emphasised is the fact that it IS possible to lose the fatigue, at least for some people. It happened for me. Most days, nobody would guess I have an inflammatory arthritis. I walk, I garden, I swim, then go home and make a roast dinner, or bake bread. I also regularly look after my 2 year old granddaughter when her parents are both working - it is tiring, but I think most people in their 60s would say that. Before the meds kicked in, I had been suffering from fatigue for so long that I told the doctor I wasn't really tired - it was just my normal. It was only when the fatigue went that I realised I had been wrong! I'm like a duracell bunny now, in comparison. Of course, I still get an occasional (brief and mild) flare. And my hands are already damaged so if I overdo the gardening or DIY my osteo kicks in. But on the whole I have a good and pretty much normal life.

You will soon see, by reading these posts, that we all react differently to the meds. For some people, sulfasalazine works really well. For me it had some effect but I was impatient and it was lockdown, so my rheumy added another med because I TOLD a nurse on the phone that i was still struggling and SHE spoke to the consultant. In fact, I had only asked to increase the dose of sulfasalazine from 4 a day to 6. Given how long it took for the mtx to fully work, I do now wonder if an increased dose of sulfa and a bit of patience would have done the trick. ALL the drugs can take quite a long time to work. But ALL of them work for some people. Only you and your rheumy will be able to judge whether it is worth sticking with sulfasalazine. Perhaps have a strategy/mindset in place to cope with continuing fatigue, but also be aware it MIGHT work. So do whatever you can to help yourself. Eat well, exercise as much as your illness allows you to, and try to stay positive!

[J1707-]

fatigue was my first symptom and many years later it is still my worst symptom. Flares and active RA starts with crippling fatigue. I have it in some form everyday even if only mild . Over do it and there is pay back . This is me .. others live an active life have children. I’m much older than you and have fibromyalgia and menopause to contend with so rather a boiling pot .

Always have hope .

[Beechwood1]

Hi there, your diagnosis is still relatively new and you're understandably overwhelmed by all of the information.

This link will take you to NRAS shop where you can order multiple booklets with really useful & practical information: nras.org.uk/shop/

The lovely ladies on the NRAS helpline 0800 2987650 are available with advice, just for a chat or as a great sounding board, Monday - Friday 9.30am-4.30pm, please give them a call - they'd love to hear from you. Good luck.

[liveinwoods]

I find it interesting that you talk about having glandular fever in you late teens. I had it when I was 20 years old when I was in college in England. I remember being so tired I could hardly get out of bed but had to keep up with my college courses and then student teaching. Maybe this is what triggered RA. I grew up very close to a large industrial estate in the north of England and have always speculated that the chemicals I must have ingested caused my RA. Now I am beginning to doubt that idea.

By the time I was diagnosed, I had some significant joint damage. Early intervention could have prevented that but I try not to dwell on that and enjoy what life has to offer.

I wish you well! This RA disease is a riddle they have not solved and after reading this blog for several years, I am still learning how to treat and cope with it. I have learned more on this site than I have learned from my rheumatologist. I wish you well!