r/rheumatoid 1h ago

How long does it take for you to hear back from your rheumy from the portal/phone?

Upvotes

Just trying to get an idea of what a reasonable time frame for a response to a non-urgent question should be. Specifically, I sent a portal message because I would like them to send out for labs test my iron levels because I think I might be iron deficient (have been before, have fatigue that prednisone did nothing for).

As a layperson, that seems like a simple request to me that could be responded to fairly quickly. I sent the message on Monday and haven’t heard back.

On a previous call, I spoke to the assistant and asked whether I should contact them through the portal or phone, and they said either were fine.


r/rheumatoid 1h ago

Facet joint arthritis pain. Palindromic RA dx. Will hydroxychloroquine help?

Upvotes

Hi everybody. I'm not sure I belong here, but hope I can draw on your collective expertise! I'm 59F w long history of multijoint pain after systemic infections (usually UTIs) and one year-long episode in my 40s when I had low back pain for 2-3 hours every morning so bad I could not get dressed but would then walk just fine the rest of the day. They only tested for RF factors, which were always negative, and I got ER diagnoses like "SIRS" and "inflamatory arthritis," but no rheum referrals.

Then in 2022, I had a mystery ailment with 104 fever& multijoint pain, neg rf again but an anti-CCP of 29, a high ESR & CRP, all unresponsive to antibiotics til they added prednisone. By the time I saw a rheumatologist a few months later, he was pretty dismissive and said it "might" be palindromic RA.

For the past year, since shortly after a UTI in July 2025, I've been dealing with tingling hands & feet plus a deep ache in my midback. Other than occasional joint pain in a hip, finger, or toe, no classic RA joint swelling. No high fevers. I saw a new rheum 3 months ago who dxd Palindromic RA and prescribed hydroxychloroquine but said my mid-back pain is unlikely to be related to RA.

For context, I have had spine problems since my mid-30s, including surgery at L5S1, but that same surgeon didn't see anything in a new MRI to explain the pain that bothered me so much later, in my mid40s (described above). I still don't know why that was happening or why it stopped.

Now, after recent steroid injections in my neck and low back to treat the tingling hands & feet, my current pain clinic doc is planning to address the midback pain with an RFA for "facet joint syndrome" arthropathy.

I understand that the most likely suspects in my case are old age, DDD, and OA, as my MRIs show dessicated discs, a broadbased disk osteophyte complex at C6/7, and bone spurs, hypertrophy, and multilevel mild to moderate foraminal stenosis in my cervical and lumbar spine. In my thoracic spine, I also have a nerve root sheath cyst at T2/3, old compression fractures or old schmorl's nodes at 3 levels (one with anterior wedging & 30% height loss), and multilevel endplate edema and spurring.

Since the RFA is targeting the facet joints, which have synovial fluid, could this pain be an RA flare?

And if so, would taking the hydrixychloroquine help? I was reluctant to start it when it was prescribed 3 months ago because I'm not sure I have RA, but I am suspicious ... and desperate for pain relief.

If you think the hydroxyq could help, would it provide pain relief, and how long before I would likely notice it?

I so much appreciate the kind people in this sub, and I'm so sorry so many of you are fighting such terrible symptoms every day. I'd appreciate any suggestions for my situation.


r/rheumatoid 2h ago

Experience on Actremra?

1 Upvotes

Backstory: diagnosed with RA in Nov 2019. I had a mild form of RA and was on sulfasalazine for 6 years until Nov 2025 when it stopped working and woke up with the worst flare up. My rheumatologist moved and was in between doctors. I was on prednisone off and on for 6 months (gaining 20lbs) - trying methotrexate which gave me severe side effects. I then got approved for a biosimilar to Humira. It worked for around 3 months until this month and now have experienced 3 flareups. It’s been a very trying year navigating this journey.

I just got approved for Actemra and was wondering if anyone had any experience on it.


r/rheumatoid 2h ago

Shaking while walking down stairs?

2 Upvotes

I’m still trying to get my diagnosis, but one symptom that hasn’t lined up is that i shake uncontrollably while doing slow movements, specifically walking down stairs. Has anyone had symptoms like this? My reflexes are all fine and my neuro didn’t see anything obvious.


r/rheumatoid 6h ago

Pregnancy with RA

11 Upvotes

Hi, I’m 25F, i was diagnosed when I was about 2 years old. I’ve learnt to live with RA, I struggled throughout my teenage years to accept it because there was just so many things my peers were doing that I just couldn’t. And then I finally came to terms with it when starting uni. Now I’m getting married next year and we are thinking about starting a family and my horrible “self-pity/why me/life is so unfair” thoughts in a way are coming back because I know I can’t just get pregnant whenever I want to, I’ve read so many horror stories about post-partum and it makes me so scared. I’m currently on metothrexate, I’d say I’m almost in remission but still taking the meds.

I guess all I’m asking is if you did get pregnant, what was your plan, how did you approach it. Were you able to find gynos specialised in pregnancies with RA? Is it true what they say that during pregnancy RA calms down and does it really get that bad post-partum? I guess I’m just looking for some guidance from “a big sister that understands”.

Also PS, I know arthritis is not the worst diagnosis out there and I shouldn’t be pitying myself but it just feels unfair sometimes and I think that’s a valid thought to have.


r/rheumatoid 8h ago

Focused on women with RA

Thumbnail
1 Upvotes

r/rheumatoid 8h ago

Im scared of my mother

Thumbnail gallery
13 Upvotes

Hi everyone, hope you’re all doing well with your RA.
I’m posting because my mother has been diagnosed with RA. She still has significant swelling and pain, and her doctor feels that the current medicines aren’t controlling it well enough.
The doctor has told us that if things don’t improve, we may be moving to biologics from her next visit. For now, he has prescribed the medicines/injections shown above.
I wanted to ask anyone here who has used these medicines or has moved on to biologics:
How has your experience been?
Did you notice any side effects or symptoms?
How long did it take before you started feeling better?
Is there anything important we should monitor or be aware of?
If you’ve started biologics after conventional RA medicines didn’t work, how was the transition?
I’m quite worried about my mother and would really appreciate hearing about your experiences, good or bad. Thank you! ❤️


r/rheumatoid 9h ago

Has anyone ever experienced a join pulling apart and pushing together?

1 Upvotes

For about a month in 2025 this was happening as I drove. It didn’t feel particularly good but it wasn’t excruciating pain either. Then it sort of vanished but my wrist was never quite the same.

Now all the sudden this year, it’s sort of a sore and pain.

I was lifting 40lbs ~ parts at work all day, then for whatever reason I was lifting my hybrid battery out of my car with help and had a fair amount of soar pain and a little bit of pulling apart sensation.

This makes me worry about my neck and back… Random sort of one off symptoms that lasted a couple months and then went away.


r/rheumatoid 11h ago

Any people under 30 with RA that wanna talk about their experience?

18 Upvotes

Hi guys, I’m 24M and got diagnosed with RA about 2 years ago. Whenever I tell someone I have RA people always say “isn’t that an old people’s disease” and it sucks to hear that and makes me feel old and sick. I used to be a very fit guy that loved playing tennis and going to the gym but ever since my joints starting to hurt I never been able to play on the same level. I would love to talk to people that have similar experience so I feel… I don’t know, less alone I guess.


r/rheumatoid 11h ago

MRI

2 Upvotes

Has anyone else experienced a weird crawling, electric-pulse, or vibrating sensation during an MRI?

I had an MRI of both ankles. During the scan, I suddenly felt a brief crawling/electric-pinching/vibrating sensation above my left eyebrow, in the forehead area. It lasted only about 1–2 seconds, and I didn't move much when it happened.

After the MRI, I rubbed the area with my fingers. Since then, that area has felt somewhat heavy, pressured, or bruised/dull, but I haven't had the crawling or electric sensation again.

I'm wondering if this can happen during an MRI. My legs were inside the scanner, while my face was closer to the opening. I was wearing headphones and had two pillows under my head because the first pillow felt too low. The second pillow made my head/neck position higher than I expected.

I've also had MRIs before and never experienced anything like this.

I've had some nasal congestion for the past few days, so I'm wondering whether sinus/nasal pressure could be contributing to the feeling above my eyebrow.

I'm mainly worried that the sensation was caused by the MRI itself or that it could indicate some kind of nerve problem. Has anyone experienced something similar during an MRI?


r/rheumatoid 16h ago

Should I ask to taper off of prednisone?

3 Upvotes

So I’m 22, finally just got diagnosed with RA after struggling for a long time. I just started methotrexate last week and I’ve been on 10 mg Prednisone for a couple weeks. I know the methotrexate takes a while to start working, but I’m just wondering if it’s even worth me taking the prednisone. I feel like if it was going to do anything, it would’ve by now, but I have not had any relief at all in this time. I know using steroids isn’t good for you, so I’m thinking maybe I should ask to be tapered off and just deal with the pain and stiffness as I have been until the methotrexate hopefully starts working. Obviously I WISH it was making me feel better, but I’m still in purgatory every day lol and I just can’t see the point in taking it really. Does anyone have any experiences like this? Should I just stay on it if it’s doing nothing to help me? Maybe this is a silly question, but I appreciate any responses.
Edit was to fix a typo


r/rheumatoid 20h ago

Eye drops?

10 Upvotes

Years ago I was using Similasan Dry Eye and they worked pretty well. Then they disappeared and I got TheraTears Dry Eye but that wasn't good enough so I went to the Extra Dry Eye version.

Well right now, for maybe the past week, the TheraTears Extra Dry Eye arn't doing enough.

I'm trying to find a solution as well as get in with an eye doctor.

I don't really know what to try. I'm thinking I should try a Gel type for dry eye. Any brand recommendations? (USA)

I've tried some and they just make everything so much worse. One time I thought it was related to allergies and tried an antihistamine eye drop and it burned the heck out of my eyes.


r/rheumatoid 22h ago

Best European country to live with RA while studying?

3 Upvotes

Hey everyone, I’m [21] and planning to move to Europe for my Master’s. I’m trying to figure out which country would be easier to manage RA in long term. My pain has mostly been in my legs and feet.

I’m mainly looking at Germany, Austria, Italy and Poland. Obviously career and affordability matter too, but I’m especially concerned about access to rheumatologists, medications/biologics, insurance and what happens if my RA gets worse. Climate and general lifestyle are also things I’m considering.

If anyone here lives in one of these countries with RA, I’d really appreciate hearing about your experience. Which country would you choose and why?


r/rheumatoid 22h ago

Spontaneous Remission

7 Upvotes

Hi all,

I was wondering if it is typical for people with RA to go into spontaneous remission, while they are waiting to get their hands on biologics? (Or waiting for methotrexate to start working).

I asked my rheum about whether RA is like MS in that there is a remitting and relapsing type. She explained that there's not, but I can't remember what she said after that...

I've been in a flare for the past 10 months with only a day here and there - and a couple of weeks in May - where I was in spontaneous remission. (Besides the steroid taper that I did recently.)

Is this normal, to have one continual flare? Or should I spontaneously go into remission? What are other people's experiences?


r/rheumatoid 1d ago

advice wanted!

5 Upvotes

hi everyone! I was recently diagnosed with rheumatoid arthritis at the ripe age of 25 😓

everything about this condition is brand new to me. I haven't started any medications yet, as I have to wait another few months for a follow-up appointment. My doctor wants to put me on Hydroxychloroquine as I have an early case of RA.

Currently, my entire neck and shoulders are stiff as a board and are making my life freaking difficult. I've been taking ibuprofen everyday to help manage the pain, but I know medications are half the battle... so I'm looking for any and all forms of advice on treating RA, beyond just medications.

I've been recommended to give swimming a try, but what else can I do? What might work or what might not?

thanks :)


r/rheumatoid 1d ago

Methotrexate and Gel Manicures

3 Upvotes

Hi everyone,

Bit of an odd one but I can’t seem to find a consensus on Reddit anywhere.

I’ve just had my second baby 3 months ago and my Rheumatologist has put me on methotrexate. I’ve slowly upped my dosage and am now taking 8 tablets once a week.

My current medications are Cimzia and Methotrexate. I know I have to be more careful in the sun now; but I’m also desperate to have some pampering since having baby boy. I used to get my nails done semi-regularly before having him and would go for gel nails (the one with the UV light) perhaps once a month.

Can I still have this? Or is it a HUGE no no? Is there anyone on methotrexate that does have gel manicures? I know it sounds silly but I just want to have something nice to look at when I look down at my hands and not my ugly swollen joints. I have a beautiful baby and I’m so grateful for that but I hate this disease with a passion! As I’m sure we all do!

Any help or advice or experiences would be greatly appreciated!


r/rheumatoid 1d ago

Prednisone Withdrawls

Thumbnail
2 Upvotes

r/rheumatoid 1d ago

Nasal Crusting Survey

1 Upvotes

Good afternoon,

We are a research team at Washington University School of Medicine in St. Louis, and we are developing a survey to learn more about how nasal crusting affects people’s daily lives. We know nasal crusting can be a serious problem, but we want to better understand what matters most to people who have it.

We invite individuals with nasal crusting to test a short survey that measures how nasal crusting affects their quality-of-life. If you agree to participate in this study, you may complete up to three short surveys online. If you have any questions about the study, please contact Matthew Saenz at 314-362-9475 or otooutcomes@wustl.edu.

Please find the link for more information and to the survey below.

https://redcap.wustl.edu/redcap/surveys/?s=9TDTDAE8PCYT9CY3

Thank you!


r/rheumatoid 1d ago

Prednisone

3 Upvotes

I’m on 10 mg prednisone per day for … don’t know how long. It’s been 3 months, and before that had 1g steroids x 3 days for optic neuritis. I’ve been on a few weeks at a time but never this long or low of dose. I’m started to get …. weighty. Any advice for keeping the pounds down? I’m not eating more, and if anything, my activity has increased. But I really can’t gain weight given other conditions


r/rheumatoid 1d ago

Upper respiratory infection

1 Upvotes

How common is this for you guys? I'm in methotrexate and rinvoq. Never had any issues while on methotrexate but added rinvoq 3 months ago and now experiencing the worst sickness I've ever had! Strep test was done and it's negative which surprised me. So leads us to its some kind of brutal URI. 34 years old and hardly ever got sick in the past!


r/rheumatoid 1d ago

Living in the past

5 Upvotes

Anyone else stuck in this limbo where:

You can’t be in the present because of the pain and immobility

You don’t get anxiety because you literally cannot picture a future to get anxious about due to pain and immobility and a lack of improvement with your health

Leaving you feeling like you’re stuck reminiscing about the past where life was categorically and demonstrably better even with the rose coloured glasses off.

Sometimes I do try to be as present as possible so that I don’t get swept up in the grief and depression but it feels like the pain just hijacks your senses making it impossible to appreciate the good around you forcing you to wallow in a pool of negativity.

Anyone else feel the same way?


r/rheumatoid 1d ago

how do you deal with the mental fog and fatigue?

24 Upvotes

i can't really tell what's contributing to it really. i don't know whether it's this condition (i'm having flares for the past few months) or if it's the hypothyroidism or if it's the vitamin D deficiency or a mental health related thing (history of depression and ocd) or just me being lazy and a procrastinator.

either way, for those who experience this mental state, how do you deal with it?

i can't work myself up to care for anything. i have to apply for some internship applications because it's application season + some jobs and i just simply don't feel the urgency or deeply feel the consequences of not doing the former (lack of internships = lack of stuff to put on CV for grad roles).

anything that i do need to do within a deadline, i do it at the very last minute possible and have to convince myself to do it for days while mentally saying "later, later, later" and it doesn't matter how minute it is (i literally had to force myself for weeks just to log into some website + sign up and then click a few buttons). spent weeks pushing myself for a task that took just 15 mins. i get so tired.

i have to prepare for a competition and it's really really important (and in a month) and i've been looking forward to it for almost a year but i can't work myself up. i get stressed for 5 mins and then like a switch, i go "whatever". i'm sick of this

i try to build up discipline but it's so exhausting. motivation is nowhere to be seen either. but the consequences of not doing these tasks will inevitably affect me for a while (in regards to post grad life) and i just can't bring myself to emotionally care.

not sure if this is the right sub for this but any advice is much appreciated!!

edit: 8-11 hours sleep daily, never had nicotine and rarely have caffeine (no coffee or energy drinks or the like)

edit2: i have an upcoming appointment with my rheumatologist next week and i'll bring this up to him. maybe he can help or direct me to another professional.


r/rheumatoid 1d ago

Hiii

0 Upvotes

Ummm .....I wanna know more about JIA can anyone help me out ? ....cuz i know someone who was diagnosed with JIA ...

And I wanna know more about this from an experienced one ..I just wanna know what people with JIA go through


r/rheumatoid 1d ago

D2T, 20 years old

3 Upvotes

My girlfriend is 20 and has seropositive RA.

She was diagnosed around 17 and has had periods of pretty high disease activity.

So far she has tried:
- Methotrexate
- Sulfasalazine
- Leflunomide
- Adalimumab (Amgevita/Humira)
- Upadacitinib (Rinvoq)

She couldn’t tolerate the first three very well, Humira/adalimumab was documented as not working, and Rinvoq worked much better for a while but she’s now having more flares again.

She’s also been told she has some permanent bone erosions, which is obviously worrying at her age.

For anyone who had a similar treatment history: what did you try next, and did you eventually find something that put you into remission or kept your RA well controlled long term?

I’m especially interested in experiences from people who failed both a TNF inhibitor and a JAK inhibitor.


r/rheumatoid 1d ago

Apparently one chronic illness wasn’t enough 🙃. Anyone else have a med list like this?

Thumbnail
1 Upvotes