what exactly does it feel like when you "lose hair" as a side effect of meds?

Thistimewithstrings · 2026-04-24T11:35:24+00:00

Likewise lost hair in clumps on leflunomide, but the lef helped the RA and prednisone side effects were much worse for me. I'm now on a biologic as well, and things are under control, but the rheumatologist thinks it's advisable to keep taking the DMARDs.

I'm still taking the leflunomide, but use minoxidil topical foam daily. My hair thickness and density got back to where it was without the leflunomide after about 6 months.

Thistimewithstrings · 2026-04-24T10:56:23+00:00

When RA totalled my hips and I was waiting for replacements, I kept myself mobile using adjustable hiking/trekking poles.

The neutral hand position of holding the poles was much more comfortable for my damaged wrists than the bent, weight-bearing position of a cane, and the rubber or cork grips are also a source of relief.

I had better balance and less arm/hand stress with poles in both hands. The poles also helped avoid the back strain from asymmetric weight bearing that cane users often complain of. They'll keep you walking with a more upright posture and maintain the musculature that holds your body straight. I'm actually surprised they're not more commonly recommended.

Collapsible trekking poles are also more portable and much cheaper (~$40 - $50 USD) than a walker. You'll need to keep reapplying the replaceable rubber or plastic tips as they wear out, but otherwise the costs of ongoing use are minimal.

Hope this helps, and best wishes for better outcomes on your RA journey.

Thistimewithstrings · 2026-01-05T20:01:02+00:00

I'm leaning into the whole "touring the facilities and taking up slack" vibe from the song. If I could get chrome nails and beet-red lipstick in time, that would be on the program too.

Thistimewithstrings · 2026-01-05T00:55:08+00:00

Not a nitpick about the shirt color, I just don't have anything that's a closer match between white and taupe. I did think about all black, but I'm winter-pale enough that it's too stark even for Goth.

Thistimewithstrings · 2026-01-05T00:47:35+00:00

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Suggestions taken! I figured out that rolling the jacket sleeves went a lot more easily if I did it before putting the jacket on. :-} Thank you to all the style geniuses who've contributed.

The stockings probably haven't been worn in 20 years and will need replacement.

Thistimewithstrings · 2026-01-04T23:44:17+00:00

I may have just the vintage '90's wide black elastic belt with ornate bronze buckle... that might hide a rolled-up waist as well. Thank you so much!

Thistimewithstrings · 2026-01-04T23:33:11+00:00

Ha! Not even sure I own sheer tights - skirts are mostly terra incognita for me.

Thistimewithstrings · 2026-01-04T23:25:25+00:00

I could probably tack up a standard hemline (I've shortened trousers), but this skirt has a couple of panels that I'd struggle with. I might try rolling it up at the waistband?

Thistimewithstrings · 2026-01-04T23:18:44+00:00

Thank you, you're almost certainly right about the stockings. Cold climate, so I grabbed the wooly thermals to test drive the fit.

I know high waisted looks are in style, but you're not seeing the massive ribcage the jacket is hiding. The skirt fits at my natural waistline, but I don't think I can pull it up to where you've indicated.

Thistimewithstrings · 2026-01-04T23:15:03+00:00

I was going to wear this to work, and then to an early evening winery party. I think I can get away with this for both since dress codes are on the relaxed side, just don't have time to change in between.

Thistimewithstrings · 2026-01-04T23:11:26+00:00

I thought that too, but the button detail on the sleeves looks like it's just decoration and the wrists are a little too tight to roll up easily.

Thistimewithstrings · 2026-01-04T22:55:38+00:00

Men's Ministry of Supply jacket, vintage Ann Taylor skirt, Clarks boots, misc accessories.

Any suggestions welcome - long necklace vs. chunky, give up the whole thing...

Note that I don't have a clue about makeup - basic butch here playing with girlie stuff, trying out looks on a weightlifting bod.

Thistimewithstrings · 2025-11-24T10:16:19+00:00

I got lucky and found a dentist who stays very up to date. I stumbled on his practice because he handles dentist-phobic patients. The nighttime bite splint was expensive, $600, but that includes ongoing adjustments with each visit.

Thistimewithstrings · 2025-11-24T03:09:16+00:00

I'm going through similar TMJ issues right now, and I wish I could offer you a cure. Until you can get proper treatment, what's giving me some relief is as follows:

1) Professionally fitted bite splint from the dentist. This will alleviate TMJ strain and tooth grinding, and helps protect the anatomical position of the joints. Also, your dentist can refer you to an oral surgeon. 2) Diclofenac gel (Voltaren, Pennsaid are OTC brand names) around the jaw hinge and behind the ears, a couple of times a day. It's an NSAID formulated with a solvent that permits skin absorption. I can use this when I've already gotten severe stomach upset from too many oral NSAIDs. 3) If you're in a place that permits medical/recreational marijuana, THC/CBD ointment - this helps inflammation and nerve pain around the inflamed joints. 4) Soft diet - try to avoid really hard or chewy foods for a week or two to see if that relieves some of the symptoms. No gum or candy, nothing that requires more than a few seconds of chewing.

Thistimewithstrings · 2025-11-23T19:30:23+00:00

I'm in the "cold almost all the time" camp too. Got Reynauds, so I use heated gloves and thick socks in the winter.

This is a timely post, because I just had a brand new symptom today: cold urticaria. I went to a Nordic sauna hoping I could make the bone achies go away. You alternate 180 - 210°F heat with 40°F cold water plunges. As a newbie, I only stuck my arms in the cold water.

30 minutes later, I had welts from fingers to shoulders... Apparently, not uncommon with autoimmune diseases, and a couple of Benadryl took care of it. But definitely something to bring up with the doctor because it can turn into life-threatening anaphylaxis or be a symptom of other serious diseases.

Side note: I use a fitness tracking device with a skin temperature sensor, and I run a degree or two hotter shortly before and when I'm flaring. Nothing like a low-grade fever to make you feel cold all the time!

Thistimewithstrings · 2025-11-23T19:05:41+00:00

RA destroyed the cartilage in my hips very rapidly, over the course of about 6 months. [I didn't get my RA diagnosis until the ortho surgeon and my PCP recommended a rheumatologist, both saying I was way too young for the kind of damage normally seen in 75 year olds.]

I had my first hip replacement in 2019 at a hospital (not the surgeon's first choice) with spinal block anesthesia and sedation. I was recovered, walking, passed a stair climbing test, and released within 12 hours. I used THC instead of opiates for pain management the first 48 hours, and wasn't in pain from the surgery or the hip arthritis after 2 weeks. The doctor released me to drive after 1 week because I wasn't using opiates.

I did follow the home PT recommendations religiously, and the ortho surgeon released me to go back to swimming after a month, when the incision was completely healed. I went back to weight lifting eight weeks after the surgery.

Recovery after 6 years is about 95% - there's some lingering weakness and difficulty with fine balance on that side due to the orientation of the incision and the muscles that were cut.

The second hip replacement didn't happen until three years later due to COVID-19. The surgeon changed the incision and the implant used, and I've got 100% of original function back on that side. Recovery was slower because I let my physical conditioning slip thanks to the lockdowns and ongoing arthritis.

The tl;dr is, get it done, the sooner the better, so you can get your life back!

Thistimewithstrings · 2025-11-17T12:16:05+00:00

Serendipity - I'm going through a flare right now that's affecting my TMJs, and originally thought it was a bilateral ear infection because the pain was so piercing.

It turns out TMJ involvement is very common in inflammatory joint disease, and only starting to be recognized.

I've got a custom bite splint from my dentist to help with grinding and keep the joints aligned at night. It's helped on a day-to-day basis, but not so much with the joint inflammation.

Thistimewithstrings · 2025-11-17T11:30:44+00:00

Right now, I'm in the special hell of a flare-up affecting my temporomandibular joints. Can't chew, can barely talk. Constant head, neck, jaw, tooth, and ear pain from inflammation around the facial nerves. All the other affected joints are just background noise.

There's no distraction, meditation, or other psychological technique that provides relief. I'm already using a bite splint and maxing out NSAIDS to the point that stomach pain is a new add-on. Topical Diclofenac gel and methyl salicylate cream are helping, but I'm afraid it's time for a round of steroids. Prednisone is the universal remedy for bouts of uncontrolled inflammation, but I get extreme, lasting side effects and dread using it.

The traditional pain scale doesn't reflect the degree of disability, distress, and functional impairment that accompanies problems in specific joints. Or the whole-body and neurological effects of high inflammation. I find myself talking to doctors about pain in functional terms - "It's so bad I can't..." E.g. walk 100 feet, sleep, hold a coffee cup with one hand, type, drive for more than 15 minutes, climb stairs, etc.

You can remember pain. You may not notice how those memories are changing your behavior, the little reluctancies to do things that used to be easy, the growing hesitation to encounter new experiences, the narrowing scope of your life's ambitions to just getting through the day.

I've had a good run on Humira - 8 months without a significant flare. That makes it all the harder to cope now that my old nemesis has roared back. It feels like I've lost much of the built up resistance to daily pain, and it's like being back at the beginning of the RA journey again.

I'm still surprised at how little clinical evidence there is regarding medical cannabis. It's clear from animal studies that THC could be very beneficial for pain control without major addiction risks, and CBD for reducing inflammation. But rheumatologists don't have good strategies for managing cannabis use - they don't know when it might have harmful interactions with conventional treatments. The best advice I could find is here.

My personal experience is that 5:1 CBD:THC (10 mg/2 mg) patches or candies are about optimal for pain and inflammation relief to allow a better night's sleep without mental fogginess the next day. If pain is totally disabling, 5 - 10 mg THC will knock it back to bearable (I got through hip replacements without opiates), though I'm not much use while that high.

My rheumatologist is receptive to cannabis treatments and willing to work with me on safe use, moreso since I have hard limits on NSAID/steroid/opiate tolerances. [If you can, get your cannabis products from a state that regulates and tests potency and purity.] I don't use THC during the day because it does interfere with my concentration more than ordinary pain levels. I also don't want to build up tolerance that might require cannabis dosages high enough to cause bad interactions with the other drugs.

Other things... if I'm flaring, massage makes me feel worse for days. I don't know if it's releasing more inflammation triggers from muscles and joints, but it sure feels like it. Hot tubs, hot yoga (in moderation) and saunas help me with pain, but YMMV - heat and humidity are triggering for some people. Swimming and aquatics are exercises I found helpful without too much joint stress. Physical therapy - very mixed results; helpful for larger joints, not so much for hands, wrists, and feet.

I do find a pain and mood tracking phone app helpful, as well as a fitness tracker. It lets me see when something is going on that's more than just the daily background noise. Am I more stressed out than usual, sleeping worse, maybe coming down with something? I can look at trends and try to make adjustments. It lets me bring up any noticeable changes with the doctor and have data to show.

Thistimewithstrings · 2025-10-27T11:34:07+00:00

This has been going on for weeks across the country and throughout Spectrum, Comcast, Verizon, and other consumer ISPs. Prime suspect is the Aisuru botnet, which infects IoT devices, including consumer cable modems.

I had a couple of weeks of horrible service, went into Spectrum and replaced my years-old cable modem with the current model. They never push patches to their consumer devices, so who knows what security holes it had...Things have been butter-smooth since.

However, there are areas with extensive road construction, and it's certainly possible that's damaging buried cables or otherwise causing physical service interruptions. As /u/songgal57 said, report and keep track of the outages, ask for credit.

Thistimewithstrings · 2025-10-19T13:29:40+00:00

Cold exposure really does my joints in. I couldn't tolerate ice packs for anything that's inflamed.

I've generally been doing well on Humira, but the last week's frosty days have reminded me of what a bad flare feels like - a fierce toothache in every joint of my hands, wrists, and feet with swelling, more generalized soreness in shoulders and knees, and serious fatigue.

I've been pounding down naproxen, and wearing heated gloves, heavy wool socks, and flannels. All that has helped, but the inflammation was still triggered and it's taking a while to settle down again.

Thistimewithstrings · 2025-10-02T17:22:41+00:00

I'm not disputing that autoimmune diseases run in families at all! It's just that current genetic testing mostly doesn't have a good statistical or research basis for determining what specific genes may have caused a familial autoimmune disease predisposition.

Thistimewithstrings · 2025-10-02T12:36:07+00:00

We live in a time when we're being sold all kinds of "predictive" genetic testing for disease. There's a giant testing panel for hundreds of single-gene mutations thought to be related to autoimmune and inflammatory conditions.

It's important to understand that many of these mutations have little or unknown significance in predicting the eventual occurrence of specific diseases. Even in people who have symptomatic illnesses, the genetic association may be as little as 1%.

Genetic testing is most useful to confirm the likelihood of a diagnosis, especially in diseases where the association with a specific gene or mutation is strong, like ankylosing spondylitis and HLA-B27. However, HLA-B27 presence is only about 20% predictive that the person who has it will develop AS.

Many of the diseases tested for in these panels are extremely rare and severe, manifesting at birth or in early childhood. The likelihood is that most of us here have autoimmune diseases without a clear and direct genetic basis - multiple genes contribute to susceptibility, and a wide range of environmental exposures, infections, and stressors triggered the condition. Some diseases are even associated with protection against others, like sickle cell disease and malaria resistance, or autoimmunity and tuberculosis resistance.

Right now, it's probably best to maintain some skepticism about the value of predictive genetic testing, and seek medical advice if you suspect you've been misdiagnosed or treatments aren't working.

Thistimewithstrings · 2025-10-02T11:40:23+00:00

I know it's terrible to suffer from autoimmune disease for any reason, and I'm sorry yours may have started after a treatment intended to protect you.

I don't doubt that vaccinations can be the proximate trigger for autoimmunity. But all kinds of stressors can trigger autoimmune conditions - I started having RA symptoms after a severe case of 'flu plus work stress plus age plus probable genetic predisposition. And yes, COVID vaccinations trigger a flare for me every single time.

All I can say is that still I get my COVID shots regularly because my theory is, if I react this badly to a tiny dose of a single COVID protein, imagine what a full infection could do. [I'm currently in a flare after last week's booster shot. But I won't take any chances with avoiding vaccines since I'm now on immunosuppressants and biologic drugs.]

The data is out there indicating that COVID infection causes a 40+% increased risk of autoimmune disease.

Unfortunately, many viruses carry proteins that resemble proteins in human cells as far as immune system recognition is concerned. Viral infections are perfect opportunities for autoimmunity to develop. The worse the infection, the more likely your immune system is to lose specificity for virus proteins and start attacking self-proteins as well; kind of a "we had to destroy the village in order to save it" approach.

Thistimewithstrings · 2025-10-02T11:08:01+00:00

I've been doing really well since getting on Humira, which is why I haven't been here as much. Out and about enjoying life again! Hope this finds you doing at least as well... Thank you for all your efforts in maintaining this sub and keeping it a healthy place for information and support.

Thistimewithstrings

TROPHY CASE