feel like Ivd been hit by a truck last few days, pain everywhere, immense fatigue, then not sleeping.. I’m now 46, and been diagnosed with RA about 16 months ago..
currently on Leflunomide but is not really working, but having done 12 months on MTX which affected my MH really badly, and wiped me out, I was switched (albeit it worked for pain)
I’ve akways been sensitive to hormone fluctuations and suffered with pms.. but think am now entering Peri-menopause. Periods are all over the place, get erratic night sweats and like today feel completely rubbish.. like I’m trudging through treacle and my whole body is stiff (I think I may be due a period).. not to mention my mood, which is v black..
I was started on HRT but taken off and am due for surgery in 2 weeks.. but thinking I should probably try again?
I don’t know where I will go in terms of RA drugs yet.. the specialist nurse said I may be candidate for biologic, but as RA has clinically improved since diagnosis (moderate disease, positive RF, positive anti-CCP) my consultant I know will want me to persist on lef, or add in MTX.
just feel so low. I am a single mum, work as much as I can.. albeit that’s huge stress.. but I worry so much as how I will manage in a few years (my universal credit will stop), so on days like today where I can barely drag myself off the sofa it just all feels very bleak…
I don’t have much support and generally am v resilient, life has been tough and I’ve always fought it.. but this just overwhelms me..
I def think today is double whammy of hormones but just needed to offload I think..
thank you for reading
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Sapphire1701
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I think the double triple whammy is hard it is how I started my journey into RA and so a lot going on with hormones and then RA.
Personally I would have a Frank discussion about how you feel about led and MTx as I know I was awful on both and you need to have quality of life too. Being a zombie is not good and yes might help your Ra but the side effects are not great either.
My consultant is very much weigh disease vs meds vs side effects you can’t just look at bloods.
I know for me getting to biologics helped me a lot ie not crawling around the house to cope with drugs 🥰
Oof. Hrt most definitely. I recently switched to gel which you can carry on using when you have an op! I’m living proof. Hugs. Didn’t get on with the 2 drugs you’ve tried. Keep banging on the door. There are other drugs. You will get there.
If I’m reading this right you’ve been on LEF for a short period of time? It does take a good 12/14 weeks to really work and in my case the RA got worse before it got better. But the LEF changed my life, the pain, swelling etc just went. So don’t give up on it yet. But it may not just be the RA alone and perhaps you should talk to your GP? Maybe ask about some blood tests to see if anything else could be happening like thyroid or low B12. I do sympathise but it might be a good idea to make sure all the usual stuff like thyroid is ok before giving up on LEF. Obviously it doesn’t work for everyone but it gave me a normal life for years once the side effects had gone after the first few weeks. I hope that helps. I know it’s hard but RA is controllable for most people so whilst feeling so bleak it is still very early days on your journey. Probably thats not much comfort but I was about your age at the start of my journey. I worked full time with a young family that grew up until retirement. In a very stressful job too. I know it’s difficult but being positive is vital. Inevitably we all worry about things but dwelling on what you can’t change is far more damaging than accepting something which is treatable and moving forward with hope. I’m now 70 no damaged joints, no swelling and have enjoyed medical remission for years. It is the case that the new treatments you’ll be able to access on your journey will be far better than those of the past. So gird up the loins, put on the big girl pants and it’s not easy but Spring is on its way and with that flowers and warmer weather. Go for a walk and look forward, the worse bit of RA is before treatment and that’s behind you. All best wishes.
yes you’re right I’m only 11 weeks in on Lef..so aware I need to persist.. I have no side effects which is great, but my pain is significantly worse..
I’ve had all those tests done already, I def think this is a double whammy with hormones, consultant has told me already RA can worsen through menopause (with no solution)
That is exactly what happened to me then about 13 weeks in I woke up in remission. My husband had to open stuff for me as my right hand and wrist were immobile. My shoulders really hurt and it was awful, then it just worked.
Poor you, loads to put up with and sounds like you’re totally overloaded with far too many problems to cope with by yourself.
Peri-menopause is hideous when it swamps the way you’re feeling about life and it’s definitely worth trying HRT again and seeing if your GP runs a menopause group - really useful for support and info. As for your RA, you need to have a good discussion with your rheumatologist about how your drugs have affected you and what the future options are. It’s your body and although the rheumatologists know all about what to prescribe, they don’t live with the consequences and sometimes their choices don’t work for you. You’ve got to give the drugs a fair whack as they do take time to work but if you can’t tolerate them then make that clear. There are masses of new ones coming on stream all the time and one size doesn’t necessarily fit all as we on this site know only too well!
Your mental health sounds rocky and I hope you can call on support from friends and family but if not do go back to your GP. You have to keep shouting for help but once one horrible thing starts to improve, sometimes all others fall into line.
I was a senior sister and practice nurse (now retired) in the NHS and it isn’t unusual for people, particularly hard working, single mums to get to the end of their tethers but there is help out there. Go armed with questions (written down) that you need to ask to make an improvement in your life and don’t bet too despondent about what’ll happen in future - the shadows are always worse than the objects! All best.
Thank you.. appreciate your message very much and your experiences.. the lack of feeling ‘heard’ in regards to managing the day to day life stuff, in terms of my daughter, work, finances.. people don’t really appreciate. I have always been very physically fit, and always been able to work and provide.. but the combination of the disease, drugs and other stuff.. is all just too much.
My mum plans to come to next appt.. she can’t bear the idea I’ll be on MTX again.. but fingers crossed the Lef May yet work, and im sure when my current hormonal state quietens down I won’t feel so bad.
Can you get some help through your work any allowances made or child care? Menopause can be difficult I didn't get on with HRT with combination of RA meds. Don't jump ahead MTX may be different this time depends on level prescribed oral injection how much folic acid how much rest you are getting. It doesn't sound too much. Have you got anyone that can help. There's no magic wand unfortunately for us. What does your mum hope to achieve for you is it what you want? as we have to go through the different drugs unfortunately. Lots of work places now have strategies for women in the Menopause too. Hope you get sorted.
Hi, sorry to hear this. Methotrexate has been terrible for me and am going through menopause. Like you I did start HRT and found it worsened symptoms of RA, even on Methotrexate.
It's taken two years of almost having to prove Methotrexate made me feel terrible though my bloods said otherwise. My consultant actually said they need to pay more attention to how I'm feeling rather than my bloods.
Be honest with your Rheumatoid team, don't put a brave face on. I feel defeated by RA alot of the time, but now I'm not on Methotrexate I don't feel the awful depression I did.
You aren't alone, we are warriors, but even warriors loose the energy to fight at times. Sometimes we just need to give into it and give ourselves a break x
It's awful when everyday is a struggle however it won't always be like this.
In the meantime is there any thing your employer can do to make your work easier?
You mentioned universal credit if you worked fewer hours would you get any more or enough money?
Have you considered speaking to citizens advice about other benefits you might qualify for?
Try not to worry about tomorrow's problems today. You have enough to sort out as it is and in a few years you've RA will hopefully be under control along with the menopause.
I'm not adding any advise to this post but just wanted to say how wonderful to read all the encouraging words coming from members on this forum. We need never to feel alone as we go on our R A journey.
Reading your post took me back to when I was in my early 30s. I didn’t have RA then but had heart problems and polycystic ovary syndrome. I also was a single mum to a son with autism, trying to do a degree, a part-time job at uni and going through a terrible divorce. I reached some very dark places and ended up having a breakdown.
The reason I’m saying this is that I waded through the treacle and through the right medication and counselling, I managed to get to the end of that very dark tunnel. I really hope you are able to get the right medication and support so that you can start to live your life as best you can. As others have said, it’s your body and if you feel too overwhelmed by side effects, tell the doctors or nurses. From my own experience with the rheumatology dept I’m with, the nurses are better than the consultant! It also might be helpful to seek some counselling to support you through difficult times. Most therapists offer a reduced rate for certain situations. It helped me so much that I eventually became a therapist later in my career.
Hi Kati, thank you so much for your post and sharing your experiences.. I actually feel a lot brighter today.. and appreciate everyone on here offering support and shared wisdom..
we have many similarities as I’m also studying and working part-time, and actually just going into my final year of counselling diploma - so am having counselling also. I’ve been a volunteer Samaritan for many years, so have much experience of supporting others distress just unable to do that for myself , and coming here with people who understand really helps..
If you wanted a chat on here with the messaging part, I’m happy to do so. I’m glad you have been given some good advice and a bit of hope for the future from members on here. I’ve found them so knowledgeable and supportive. RA is pretty new to me as I was only diagnosed Dec 22
So sorry to hear you're going through such a bad time...don't know if this helps... but you do need to see your doctor.
As I'm 'old' and have been having terrible burning pains especially at night, twitches in legs etc as well as rheumy pain and symptoms I insisted on seeing a 'Geriatrician' now called 'Elderly Care specialist' as they deal with 'old folks' 'whole body'!
Although Rheumy team do regular blood tests the fantastic lady geriatrician gave me a thorough physical examination - not happened for years and further blood tests. I was told to visit my GP to whom she'd sent a letter...Eventually I saw the sympathetic GP who reported I had severe/dangerous low Vit D levels, and no wonder I was having severe pain and additional problems. I have had large and smaller 'doses' of prednisolone also a course of methotrexate and hydroxychloriquine and am now on adilumumab - over the past 18 months. I'm now on a prescribed large dose of Vit D for only 3 mths and then more blood tests and see GP again. Apparently some medications can cause problems with Vits etc.I know it can be dangerous to have too strong vitamins but it would be good if Vit/mineral status could be investigated in all rheumy sufferers too...Hopefully some medically qualified folk read this and are inspired to research these factors....and other people are helped...Good Luck.
Hello, I have had ra for 15 years now, been on meds for 10. Been on Enbrel injection and methotrexate and have all been fine until last year . 2 years. Apparently I am prei menopausal and my physio mentioned that you could be on RA drugs for years and they work fine but you hit pre menopause and it stops the drugs working, is this the case with anyone, if so what did they do as I told my GP and he said, i havent heard of that but it all makes sense, I am the worse now than when I first had RA in 2008? thanks
Hello Pammi2. You might like to send your question on a separate post as you have posted it as a reply toSapphire’s post, so many members may not see it. Sorry I can’t help you but I’m sure someone will come along with good advice. Best of luck!
my mood was v low on MTX and GP was concerned that in short term HRT may exacerbate (since been switched to Leflunomide).. so we made a plan to revisit
Oh ok it’s tough because you can feel down because of RA or because of medication or your hormones are all over the place.
You have to give HRT at least 3 months to settle, and then think whether you need to up it. I found that my mood did change during lockdown and didn’t improve after and major anxiety and mood swings. But I did miss a couple of periods and insomnia was at an all time high. So I did a lot of research and thought HRT was worth a try.
That is really tough. The perimenopause does complicate things when your hormones are all over the place. The one good thing is that the perimenopause does in time pass. I can empathise as I too had PMS and was so very glad to enter a time when that was past.
There are some books on PMS and perimenopause which give some helpful ideas on diet and nutrition. I certainly found them helpful.
Sorry to hear about your RA diagnosis on top of that. I don't have it but I'm on here because my husband has RA. This group has been so useful in terms of information about medication and how it can be trial and error until you find the best ones for you.
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