any advice 🙏🏽

[Mybirthday1975]

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Mybirthday1975 profile imageMybirthday1975Sheila_G

1 hour ago

Hi I’m new here I have RA I’m (stero positive)I’m having flare after flare in so sick of feeling poorly with it and so tired.I feel like it’s stole my life away from me,I can’t plan as I don’t know how I will feel I’m so fed up.I take metratrexate 15 ml (injection form)and sulfazalizine.My CRP was 30 then 26 then on Wednesday it was 12 so coming slowly down,but I still feel like I’m in a flare!!.I have iron deficiency anemia and take 3 iron pills a day and my ferritin levels was really low.I have been like this since 2021 do you have any good advice in so desperate

Thank you

[virtualreality]

Hi there, that sounds rough, so sorry to hear things are so difficult for you. There are clear signs of active inflammation in the test results you mention and that in itself can cause anaemia of inflammation. Even when CRP comes into range there may still be active RA symptoms present (has been the case for me in the past). It sounds like you need a medication review and quite possibly an increase. Have you had an opportunity to discuss your symptoms with your rheumatology team?

[J1707-]

I’m sorry you feel this way I certainly do . Like you feel like my life has been taken away from me. After 7 years I realise I just need to make the most of life anyway I can.

[Madmusiclover]

Just a suggestion but you might ask if an iron infusion is possible. I had one and now with iron tablets ferritin at low end of normal.

[Mybirthday1975 in reply to Madmusiclover]

Thanks for replying!I suppose I could ask I don’t know what range you need to be in..?I remember a few years ago I had to have b12 injections then had the tablets for quite a while then the doctor said I didn’t need them anymore!so could be that again I’m just grasping at straws to be fair just wondering what’s making me feel this bad.I think is it the meds?is it the RA itself?is it the iron deficiency anemia?is it because I’m 48 haven’t had a period since last August and I’m late perimenopause (hormones making things worse I just want to feel normal sorry for the long rant 😟

[Madmusiclover in reply to Mybirthday1975]

You can’t know but you can eliminate. I swear by hrt (oestrogel.). The normal ferretin range is in my health app when I have bloods done. Likewise b12. My b12 is always very high. Your doc will know which end of the range you are in for ferretin. I often feel tired when not flaring…

[Mybirthday1975 in reply to Madmusiclover]

Hi are you on HRT?

[Mybirthday1975 in reply to Mybirthday1975]

And does it help with RA?

[Madmusiclover in reply to Mybirthday1975]

I’ve been on it for nearly 20 years. Since before RA. I have no idea if it helps with RA. It helps with my well-being and mental state though. For RA you need to ask for a review of your medication for that. Like I said you can eliminate possible reasons for being poorly but not know til you do eliminate them.

[Mybirthday1975 in reply to Madmusiclover]

Ohh really haven’t tried anything as yet!my consultant mentioned that hormones can play a part,I’m thinking that i could be lacking hormones

[Madmusiclover in reply to Mybirthday1975]

You will be! HRT is a lifesaver for me.

[Memaw21 in reply to Mybirthday1975]

So sorry you’re having such a difficult time.

I am on HRT and it was a game changer for me. Any time I change the dose or brand my RA flares. My rheumatologist says to stay on it as oestrogen is anti inflammatory. Hope you get some relief soon. .

[Mybirthday1975 in reply to Memaw21]

hi thanks for replying much appreciated!!I think my hormones are adding to my RA I was maybe thinking of the patches!! I haven’t had a period since last August I used to be very regular every 28 days then suddenly they stopped!it’s awful just really don’t feel myself but I’m getting confused with the RA and perimenopause don’t know which is causing what!!and the different meds I take!😟

[Memaw21 in reply to Mybirthday1975]

Get some advice from a good GP.

Hopefully things improve for you soon.

[J1707- in reply to Mybirthday1975]

HRT helped with night sweats and some joint stiffness but not fatigue

[Mybirthday1975 in reply to J1707-]

Thanks for the reply I appreciate it!yeah I’m thinking of maybe trying the patch but a little hesitant due to the stigma around HRT.I was having night sweats and day ones but for some reason they have stopped now can that happen?I’ve noticed that my hormones aggravate my RA!but no period since last August 😞

[Mybirthday1975 in reply to Madmusiclover]

does it help with dry eyes my eyes are so dry it’s unbelievable I not sure if it’s the RA or perimenopause I have so much going on!!

[Madmusiclover in reply to Mybirthday1975]

No. For dry eyes you need referral to opthalmology. My rheumatologist did it but a GP could. Just try tackling one thing at a time. Keep a spreadsheet. You could also ring NRAS helpline. They are lovely.

[Mybirthday1975 in reply to Madmusiclover]

Thanks for replying!I mentioned my eyes to my rheumatologist and he said my eyes are due to the RA and didn’t say anything else but that doesn’t help me at all it’s an awful feeling!!yeah I could maybe drop them a call

[Fruitandnutcase in reply to Mybirthday1975]

While you are waiting to see a hospital ophthalmologist about dry eyes - it could take a long time - you need to buy (or maybe you can ask your doctor to prescribe some - they are not cheap) good quality preservative free eye drops - HycoSan/ Theolose duo or something like that and possibly a ‘gunky’ one for night time. Ask an optometrist for advice.

Then put them in every hour throughout the day (not just once or twice a day) or however frequently you need to until your eyes settle down, once they settle down don’t stop the drops or your eyes will just get dry again.

I also take EkoPura Vegan Omega 3 DHA capsules which really help my dry eyes - I buy them from Amazon.

[wilbertjellyfish in reply to Mybirthday1975]

No apologies needed it's crap. However you are not alone. Get on the phone to your GP and rheumatology team. You might just need some steroids for a burst to you get back on top of it or a longer term increase in mtx.

I gave anaemia of chronic disease too. I'm not on any treatment for it but don't know figures.

The problem is you have to make a fuss to get sorted.... usually when you least feel like it.

[Mybirthday1975 in reply to wilbertjellyfish]

Hi thank you for replying!I have had a Depo steroid injection and it didn’t make a difference😞I don’t know why!and yeah I also have iron deficiency anemia I’m ment to take 3 iron tablets per day when I had my bloods done they also checked my ferritin levels and it was extremely low!my RA still isn’t under control after 2 years,can I ask do you have RA ?

[wilbertjellyfish in reply to Mybirthday1975]

Until December I was told out I had sero negative arthritis...but then I was in hospital and they decided I have adult onset stills, it's rare. I do also see a haematologist twice a year. They did tests on my blood to see what sort of anaemia I have but I'm not on any treatment.

It's so hard to know what's what with these things, there is a lot of overlap. However, it is affecting your quality of life. My GP friend told me at my age I should be in the prime of my life ( we're basically the same age). I think you should get your GP to see if it's worth referring to haematology...or back to rheumatology for better meds to control the RA.

[Mybirthday1975 in reply to wilbertjellyfish]

Hi so you don’t have Rheumatoid arthritis?I have my bloods done every two weeks very closely monitored due to the metratrexate I have iron deficiency anemia due to having Rheumatoid and the ferritin levels are low due to the iron been low as the ferritin is the reserve..I’m taking 3 Iron pills a day prescribed by my doctor so hopefully fingers crossed 🤞 it will get better!

[Mybirthday1975 in reply to Mybirthday1975]

I’m stereo positive Rhumatoid arthritis I have the antibodies I just need to find the right meds to calm the RA so then my iron levels will get better hopefully 🙏🏽

[Inanotherlife]

Hi there, sorry you’re suffering. I know exactly how you feel, it does take a lot from you but hopefully you’ll experience better phases. I’m sero pos and started on those two drugs but was quickly switched to a biologic which really helped me. Hope you get some relief soon, take care.

[Mybirthday1975 in reply to Inanotherlife]

Hi! Thank you for replying..how are you finding the biological?and which one are you taking?how did you find the metratrexate and sulfazalizine?have you been diagnosed long?

[Madmusiclover]

messaged you!

[Inanotherlife]

sent you a message

[Sunshinereturns]

I was very unwell when I was on 15ml methotrexate and upping to 20ml didn’t help. However on 25ml I enjoy a mostly normal life. I was on sulfasalazine too but my body rejected it so looking at something else now. Your meds need upped. You can have a far better life.

[Mybirthday1975 in reply to Sunshinereturns]

Thank you for replying!yeah I tried metratrexate tablets but couldn’t tolerate them so I’m now on 15 ml injection form and sulfazalizine but I don’t think the sulfazalizine does anything to be fair and it makes me feel a bit groggy I take 2 in a morning and 2 at night the consultant did try upping the dose but I couldn’t tolerate it I felt itchy!!but I’ve been on the upped dose of metratrexate for a good few weeks now and my CRP still seems high and I’m still having lots of stiffness in my hands wrists and elbows and they feel hot to touch and painful!!do you have RA?

[Stills]

sorry to here you’re having a tough time. I can’t offer much advice as my diagnosis is Adult Onset Stills Disease which for me manifests as rheumatoid disease and is sero negative. I can say that starting HRT aged about 52 has been the best thing for me and helps me feel better overall as dealing with the menopause and RA symptoms was too much. I have other AI linked conditions like lichen sclerosous that arrived with the menopause. I’m prescribed Everol conti patches and have no problems with them. Now 62, at a recent gyne appointment the doc said I could stay on it which is a relief as prior to starting I felt like you with just too much going on all at once. Wishing you better days.

[Mybirthday1975 in reply to Stills]

Hi thank you for replying to me I really appreciate it!can I ask can you feel sickly with perimenopause I suspect I’m late peri as I haven’t had a period since August I don’t know if it’s the meds or peri that’s making me feel sick with headaches I feel like I could do with a good period to me me feel better if that makes sense.I also feel the peri is making my RA a lot worse I have that much going on I don’t know what’s causing what!!I have thought about trying HRT patches but I’m afraid of it especially with all the other meds I’m on.My eyes are causing me issues there so dry and uncomfortable the list goes o.I just want my old life back I’m so tired and down feeling this way I don’t know what to do!! 😟sorry for the long post!

[Stills in reply to Mybirthday1975]

I don’t recall feeling sickly at all just very tired, very angry, flushes obviously snd it made all my RA symptoms worse and unbearable, there is only so much we can tolerate and still function. Once the menopause symptoms faded I was able to cope with my usual RA pains again.

I think HRT is considered a hormone not a drug and I have read in the PIL that patches and gels are kinder on the body as they are transdermal. We’re all different and you should seek proper medical advice but I will stay on HRT as long as I can.

[Boxerlady in reply to Mybirthday1975]

I had awful nausea when peri-menopausal (as well as many other horrible symptoms) but HRT really helped. This was over 10 years before being diagnosed with RA so hormones were definitely to blame at that point.

[Mybirthday1975 in reply to Boxerlady]

Morning yeah it’s awful I haven’t had a period since last August and I was every 28 days and extremely regular!I don’t know if my periods will come back or if I’m close to late perimenopause what do you think?I am 49 this year and the hormones are definitely 💯 making my RA worse I feel terrible 😞

[Boxerlady in reply to Mybirthday1975]

I'd say that you're almost certainly in peri-menopause but that can last for a long time which is why HRT was a life-saver for me. I'd suggest that you make an appointment with a HRT- savvy GP and discuss trying it; if you can balance out your hormones a bit, it might help you to see the wood for the trees - it's so difficult when symptoms can be caused by more than one thing. I had crashing fatigue as well as nausea with peri, both of which were helped by HRT and more recently I've had nausea and fatigue from RA meds (or RA itself in the case of the fatigue) so it must be extra hard for you when you can't work out the cause. 😢

[Mybirthday1975 in reply to Boxerlady]

Hi yeah I was maybe thinking the HRT patch I have already seen my GP she said that she will refer me to the menopause clinic to discuss my options but first I need to have a blood test for thyroid!yeah your right I don’t know if it’s the RA or iron deficiency anemia I have or the menopause,my inflammatory markers (CRP)have been high also so that might be contributing to the mix.can I ask what meds your on for RA?and have you been diagnosed long? Thanks 😊

[Boxerlady in reply to Mybirthday1975]

I was diagnosed in 2019 and am on Methotrexate by injection (15 mg but was on 20 mg until this week), Hydroxychloroquin (2 a day) and Sulphasalzine (6 a day)

[Mybirthday1975 in reply to Boxerlady]

I’m on metratrexate injection 15ml and sulfazalizine but how do you know if the sulfazalizine is working?as I’d rather not take it if it’s not doing anything!I’ve also tried Hydroxychoroqin but it didn’t do anything.I think maybe my metratrexate needs to be upped but only been on 15ml around 4wks so don’t know if they would up the dose yet?do you have your CRP done regularly if so has the metratrexate brought your inflammation down.I’m also still taking 2x Naproxen 500s per day and codine every day!!do you still need or use these drugs?

[Boxerlady in reply to Mybirthday1975]

I started on Methotrexate and Hydroxychloroquin and after a flare during lockdown, my Methotrexate was increased to 25mg but I didn't make enough progress so they added Sulphasalzine. That was a game changer for me so I asked to reduce the Methotrexate to 20mg with no ill effects. I've now just gone down to 15mg so hoping that things continue well. I haven't needed regular painkillers since the Sulphasalzine was added although I was using Paracetamol and Ibuprofen to help with one wrist which was still causing a few issues. At my last appointment, the rheumy gave me a steroid injection into my wrist which seems to have done the trick and that's why I've asked to reduce the Methotrexate dose. I'm not sure about my CRP, sorry but I think that my blood tests have been fine for a while which is why the rheumy suggested the steroid injection. She did say that she suspected that my wrist might now have some damage as it's the only problem area but she also scanned it before the injection and there was localised inflammation; interestingly, I've been feeling better in myself since the injection so I wonder if the inflammation was affecting me generally even though it was localised 🤔 I don't know much about these things but I'm just grateful to be feeling better and making the most of it while it lasts 😁

It's difficult as we all react differently to different meds; I just kept my rheumy team updated and if things didn't improve after giving each dose increase time to work, they tried something else. It's hard to be patient when you're in pain so I really hope that things improve for you soon.

[Mybirthday1975 in reply to Boxerlady]

Aww thank you 😊 I hope so!!are you RA positive?that what I am!and do you have your RA meds if you have a slight cold or sniffle the only reason I ask is that so people do and some others hold off it so sometimes I don’t know what to do!and have you had all your covid jabs and boosters ? Sorry for all the questions but it’s nice to speak with people who get it and know what it’s like 👍

[Boxerlady in reply to Mybirthday1975]

Yes, RA positive. Strangely, I haven't had a cold since being diagnosed so haven't had to make that decision. Had every jab offered! 😂

[Mybirthday1975 in reply to Boxerlady]

aww yeah same as me!to be fair I work with children in a school and touch wood I haven’t had a bad cold since getting diagnosed with RA 2 years ago it’s strange isn’t it but I’m glad 😃 I’ve had covid about 4 times though and yes I’ve had all the jabs offered apart from the shingles apparently I don’t need it because I’ve got the antibodies or something 👍

[Green230461]

are you able to get an appointment with your good old GPsometimes they are the key to unlock another path. Hang on in there RA warrior 👨‍👨‍👧‍👦

[Mybirthday1975 in reply to Green230461]

Thanks for replying!it’s so hard getting in at GPS but in at hospital on Wednesday for methotrexate shot!was ment to be seeing my consultant last week but it got cancelled 😞 can I ask are you on metratrexate? Or sulfazalizine excuse the spellings!!

[Green230461 in reply to Mybirthday1975]

I am on sulphasalazine and baricitinib pain free during the day and hand pain at night when the air pressure changes! I am a walking barometer 🤣

[Mybirthday1975 in reply to Green230461]

hi do you feel the sulfazalizine works for you?I don’t think I get any relief and I’ve been on it quite a while!!

[Green230461 in reply to Mybirthday1975]

It took 12 weeks to kick in and has been great ever since. Backs up the baricitinib which has been a life changing miracle tiny red tablet! There is a cocktail out there for you too they just have to find it

[Otto11]

Hi sorry you’re struggling. I struggled badly when I first started Methotrexate with awful nausea & mouth ulcers. There were no Biologics back then so it was just carry on which I did & after several months things started to improve. I was on Methotrexate for 15 years & it worked well for me. We are all different though so what works for one may not work for another. Regarding your eyes the best place to start is an appointment with an optician. They can tell if you have a problem then you can get properly referred if necessary. I developed something called Sjögren’s syndrome so have daily eye drops. It was spotted by Optician & confirmed by Eye Clinic at hospital. It can be quite often seen alongside RA. I would ask your GP for a blood test for anaemia & also your B12 Folate Ferritin & Vit D. All need to be optimal levels. All of these can cause tiredness. Do you take Folic Acid alongside Methotrexate?

[Gjbrose]

Hi sorry to hear that you are struggling it’s so hard to cope with flares but you will get support from this group who all know what you are going through, are you on Naproxen it really helps with stiffness and which pain relief are you taking, pain can really get you down, don’t be afraid to ask for help x 😊

[Mybirthday1975 in reply to Gjbrose]

Hi yeah I’ve been taking Naproxen and codine for nearly two years!!but they haven’t got my RA under control yet or the inflammation😞

[zen4]

I am so sorry that you are having a really tough time at present. Its difficult in the middle of all this to see that things will improve but they will. The iron will build up gradually, the drugs maybe need s bit of sorting. It is difficult to balance things sometimes but if you are still getting flares it sounds like you need the meds reviewed. Menopause....... hrt may help Try eating brazil nuts they have selenium and they really helped me! Don't have more than 3 a days though. You most probably need eye drops for your eyes. Having dry eyes is a well known symptom of RA. I take hylo drops and they are really beneficial. Lastly try to do some of the things you enjoy even if you are not able to plan ahead easily. If seeing friends or family build in back up dates when you plan.

Keep strong You will get your life back even if you have to make some changes and adjustments

[Retirednhs]

Hello . Most people who developed RA suffer from fatigue a especially if newly diagnosed but if you're else arelow as we this should be looked at by your gp who can either deal with it themselves or refer you to a haematogist to investigate gate further It sounds ds as if your RA dept is on the right meds as your bloods are improving but you can always contact the RA nurse or help desk depending g on your area a d discuss this with them as we An afternoon rest would help hope these few words do as well

[Mybirthday1975 in reply to Retirednhs]

Hi thanks for replying!yeah I’ve never felt so tired I’m my life and I have low ferritin level and I have iron deficiency anemia and going through late perimenopause so I think may all these things are adding to the mix of problems I just hope things are going to improve soon as I don’t know how much I can take of it 😞

[Bethany02]

You could ask if you could have a steroid injection to help you through this bit they can also up the sulphasalzine and methotrexate depending on the dose I don't know if you have a nurse specialist number but if you do leave a message and they will get back to you do tell them everything including how miserable you are

[Mybirthday1975 in reply to Bethany02]

Hi thanks for replying and I’ve had a Depo steroid injection and it didn’t work for me unfortunately!they have upped my metratrexate to 15ml around 4wks ago but not much improvement as yet!and the sulfazalizie I take 2 morning and 2 at night but my consultant upped my dose to 6 but my skin started to itch so back on 4 but I don’t think they do very much😞

[65_women]

well I take Rituximab which has help amazingly for me with RA.

[Mybirthday1975 in reply to 65_women]

Hi thanks for replying is that a biologic?

[Retirednhs in reply to Mybirthday1975]

Yes it is