CT, regarding the hair loss, my grandmother who was on MTX for years kept all her hair. I am jingling for your locks :yes:
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Thanks for the patience and support, just talking with you and others on here has been very helpful and encouraging. It’s been a long road of moderate-severe pain for over 20 years and being told it was inconclusive or fibromayalgia because all the tests came back negative. My retired GP whom I love like family basically said he didn’t care what the tests said and that he believed I had RA and Lupus, of course without the proof he couldn’t prescribe any of the biologics to slow down the damage. My liver/kidney levels were already up and down although not concerning, I hope that doesn’t influence what the methotrexate might cause to them. If it wasn’t for my new GP being so adamant and pushy I would still be undiagnosed.
I read up more about the folic acid and you’re right, my RA doc isn’t alone in her methods, others say 1mg daily even on the day of the injection. I think for the time being I will stick with the 2.5mg daily excluding injection day like my GP says and you concur. Some say the folic acid does not affect the effects of the methotrexate and others say it does, so it really is a mixed bag.
I’m going for an ultrasound on Tuesday for my knees to check for damage or to see if anything else is going on with them. I’m also prone to chronic cysts and those and the fibro is what the doctors were blaming my knee pain on before the seronegative RA diagnosis.
Last night a flare up started to kick in and instead of flaring out of control and into acute pain like they normally do it stayed at a moderate pain level and kind of plateaued. I’m not sure if it’s the injections starting to work or not…I certainly hope so!
Do you think the extra pain you’re feeling might be from the suspected but undiagnosed Lupus you mentioned? I’'ll have to read up on your Hashimoto’s and Sjogren’s because I don’t know much about them or their symptoms.
Thaaaaank you!!!
I’m not a vain person by any means but I’ve had this hair for a very long time and have kind of gotten attached to it! :lol:
I’ve always said that if I got cancer again that required major chemo that I would cut it off and make a wig out of my own hair. When I brushed this morning I didn’t seem to lose much and am hoping that this may be my usual winter shedding that happens every year.
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That is really good news about not flaring out of control. I sure hope it’s the mtx.
I just don’t know about the possible lupus being a factor. I was diagnosed with it for two reasons: first, my mother had severe lupus, and second, I have some weird kidney issues that a nephrologist thought might be due to lupus. But I don’t have the usual lupus symptoms, I can be in the sun with no problem, and RA could actually cause the kidney problem. I was actually diagnosed with lupus when I was 17, but the doctor changed his mind shortly afterward. I bet some of the problems I was having back then were due to RA, but I didn’t get diagnosed until I was 39. That’s when my symptoms went ballistic.
Hashimoto’s and Sjogren’s can both cause overlapping symptoms with RA, so the whole thing is hard to untangle. My Hashimoto’s is supposedly under good control, but the exhaustion I feel could be Hashi’s, lupus, RA, Sjogren’s, you name it.
Rebecca
Oops, sorry…I thought it was suspected Lupus so I thought you hadn’t been diagnosed with it yet.
I do feel some empathy for the doctors when dealing with patients with so many things wrong with them that overlap and mimic each other.
Lupus runs in my family as well, I do have Lupus symptoms but thy are only mild/moderate and not all the time. The Lupus test also came back negative which is why they’re leaning towards the seronegative Lupus.
You are correct–it’s back to being suspected, not diagnosed. I might have been confusing in my post on it.
I didn’t realize there could be seronegative lupus. Of course, I know about seronegative RA, just from being on support forums. But the lupus possibility surprises me. I’m starting to think that rheumatologists have a dartboard they use to diagnose, since it’s so hard to make a reasonable determination with these sneaky diseases.
Rebecca
Neither did I until I asked y GP. I think some doctors refrain from bringing these things up because they don’t know the answers to them.
It took 7 years for my aunt to get a positive Lupus diagnosis.
My mother had her first recognizable lupus symptoms in her late 20s or early 30s. I remember, even though I was very young. She was so sick. As the years went by, her symptoms were classic lupus, but doctors just didn’t recognize it as most had never heard of it at that time. My father was convinced that she was just nuts. I think she did have mental issues, but she really was sick. She got her diagnosis finally when she was about 45. She was so relieved. My father’s response was to leave her and file for divorce.
Her issue wasn’t being seronegative, it was doctors just not having any knowledge of the disease. There’s no way to know what blood tests would have shown all those years, since she wasn’t tested. When she finally did get tested, she was seropositive.
We used to joke that her headstone would read “I told you I was sick!” However, my sister scattered her ashes (I agreed but couldn’t be there), so there is no headstone.
Rebecca
It’s frustrating for many, so sorry about your mum.
Sometimes if doctors would just think a wee bit outside of the box and not rely so heavily on tests that may be false and their medical textbooks.
I had horribly acute attacks of pain in my abdomen starting at the age of 10, I was put through tons of tests that we’re all incluclusive and they told my mum it was all in my head. At the age of 12 I was rushed into surgery with a major gallstone attack, they removed my gallbladder and in it were seven tiny little stones that were as smooth as pebbles on a beach. They had worn down to their tiny size and smoothness over the two years I went undiagnosed. All it would have taken was a proper ultrasound to pick up the stones yet it was never done because not one doctor suspected gallstones in such a young person because they didn’t learn of the slim chance in their medical textbooks and schooling. Two years of one of the most acute pains for a 10-12 year old is absolutely horrific and to this day is the leading reason why I don’t trust doctors.
Wow, CT, what a horrible experience.
Rebecca
Morning Rebecca!
Do you still get flare ups while on the methotrexate?
I just came out of a four day flare up involving mostly my right foot, I was hoping the injection would put a stop to those. Just waiting on blood work results for liver/kidney levels to decide if I’m going to start taking the daily Leflunamide along the injections. I’ve read up on it and it has some nasty side effects as well as it stays in the system for 2 years even when one stops taking it. There is a drug to take that counteracts it and helps to flush it out of your system faster. Good thing is that my pharmacists are very supportive and they ask lots of questions and offer lots of advice.
I always feel a bit odd sharing my RA experience, because I think I’ve had about the best luck possible (other than just not having it). But I scared myself a bit reading experiences online right after being diagnosed, and I think generally the people who do post online (not here, but blogs and such) are those who struggle the most, so I do like to share my experience.
I was diagnosed in 2016 after about 9 months of symptoms. Seropositive, high inflammatory markers, and a pretty typical set of symptoms. I probably would have been diagnosed even faster, but I didn’t have a GP at the time and it took a while to get in. I was also certain it was Lyme, and spent a while chasing that down via walk in clinics. She ran the blood work immediately, and was able to get my appointment with the rheumatologist moved up almost six months based on the results.
I started on MTX oral right after the first appointment with the rheumatologist (Sept. of 2016), and shortly after the fifth week of MTX, I realized I couldn’t remember the last time I’d woken up with my hands hurting. And that was the end of my pain. I’ve had zero flares since then. I do have some side effects from the MTX (nausea mostly), but have been able to keep working full time and training and competing my dog in agility with no blips. I haven’t really ridden much since my horse died a few years ago, but I have wondered if the hip pain I experienced riding would be less now. I actually feel better than I have in years. My last appointment, I did bring up the lingering nausea, and had my folic acid bumped up and got a prescription for Zofran to have on hand. I’ve taken it once so far, and it did seem to help. I think the higher folic acid has made a difference as well.
I’m currently on 15 mg MTX/week, and 3 mg Folic acid daily. I added a Vitamin A supplement as well on the recommendation of a friend whose doctor suggested it for helping protect the digestive tract against the MTX. My rheumatologist has said that if I stay flare-free until May, he will probably drop my MTX dose a bit.
I know auto-immune diseases are so complicated and varied and lifelong, and my own could certainly take a sudden turn for the worse, but I have my fingers crossed (now that I can do that again!) that this easy beginning is a good sign. I wish I saw more people having the same experience, and certainly hope that yours comes under control soon.
It’s hard to say if what I experience is RA flares. First off, the methotrexate is not the primary drug that is controlling my immune system, as mtx alone didn’t work for me. Its function is to keep me from building tolerance to my biologic (Kevzara, which just was approved by the FDA last year). Second, I have been pretty miserable for about three years now. I went from Humira to Orencia to Kevzara in that time, and I still feel rotten. My rheumatologist says my inflammation numbers are all normal due to Kevzara (they weren’t before I started on it, hadn’t been normal since Humira started failing for me). So she says my problem is all fibromyalgia now. But what I experience seems very different from what other folks I know with fibromyalgia experience. I sure feel like I have joint pain, but she says it’s not really, just feels like it. I could prove it one way or the other by doing a quick round of prednisone, but I don’t want to go to prison, and that drug makes me totally lose my mind in anger.
My right shoulder started acting up after behaving for quite a few years, and I swear I have the start of a trigger finger in my right thumb. But I can’t see my rheumy until freaking January, as she has been on maternity leave for several months and does not have another doctor covering regular appointments for her. My last appointment with her was in August. That’s a whole other story of frustration, as her office staff was supposed to be ensuring prescription refills get done in a timely manner, and not a single one of mine has been done correctly. I haven’t wanted to see the doctor who is covering urgent appointments for her, as I suspect he or she may have had a part in my messed up refills. I had my family practice doc check liver and kidney values last month, so at least I know my meds aren’t trashing those organs. But she didn’t check inflammation numbers–for that I have to wait until my January rheumatologist appointment.
Rebecca
It’s quite maddening at times, isn’t it? I’m opposite from you as my medical team are scrambling like mad to get everything under control before I relocate.
I think I’m just quite wary about starting the Leflunamide, it sounds like a pretty heavy duty drug but research says it works quite well in tandem with methotrexate.
My knees were really bad so the docs wanted to do an ultrasound where they found the RA damage and inflammation has built up around the scar tissue from the three fractures I had 18 years ago. When I bend my right knee the sack of inflammation actually pops out like a half inflated balloon being squeezed. They also found several large and small deposits of calcification rubbing up against things.
Yeah, maddening is the right word.
What I always remind myself about the meds is that all the warnings and side effects listed are everything that ever happened to anyone. What is more useful is the frequency of each type of side effect, and that information can be hard to come by. I always ask my rheumatologist that question, and I think the answer I get may be more focused on what he/she experiences in his/her practice.
I feel my rheumy in Colorado was probably more plugged in to overall data on the meds than my rheumy in South Carolina. The one in Colorado taught at University of Colorado before he went into private practice. I was one of his first patients on his joining one of the top rheumatology practices in Denver (and I believe they are known nationally as well). He is maybe two years younger than me, our kids were about the same age, and I had 20 years to get to know him. So I was always pretty confident on his guidance.
My rheumy in South Carolina is much younger, although she is board certified as well, so that helps. I have less than a year’s experience with her, and I feel that the answers she has given me have been more from her experience than the more global answers I was getting. For example, she had absolutely no hesitation in wanting to prescribe Cymbalta for me, and when I researched it and pushed back, she said she had no problems with any of her patients who were on it. Yet there are lots of reports (some even here on COTH) of people having big problems and having difficulty getting off the med, or having the side effects persist after discontinuing it. Seems like she was focused on her own experience.
I don’t know what the answer is, except to make our best guess on trying a med, and then see how it goes.
Are you a candidate for knee replacement?
Rebecca
Where do you go for a rheumatologist in South Carolina? If you prefer to send me a PM, that is fine. I have connections with the Medical University of South Carolina. Their Rheumatology and Immunology Division is amazing – they do research, clinical trials, and they see patients. Their rheumatologists there are really top-notch and they have all of the latest information right at their fingertips.
SCM1959
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My RA doc is always referring to clinical trials, proven trials, etc…and has asked me to join their research group as a patient with feed back. She is very pro active and on the ball with everything, tells me to call anytime I have a question or need a quick appointment. Obviously with the amount of damage that’s been caused over the years of not being diagnosed she wants to start aggressive treatment to stop any further damage and she feels the methotrexate/leflunamide is the best first attempt on a trial basis and they are fairly low doses. I’ve been informed of the side effects and I have the RA, my GP and two pharmacists watching me like hawks…I think I need to realize that not everyone suffers these side effects and I need to be more positive and give it a try at least.
I think some of my difficulty may stem from being told either they could not find anything or that it wasn’t RA/Lupus to suddenly switch over to a pro active medical team that is very much on board in making me feel better and have a better quality of life. So much information, advice, ideas and many more tests has become a bit overwhelming.
I have been told by three orthopaedic surgeons that they won’t touch my knee with a ten foot pole in fear of paralyzing me. The car hit the outside of my left knee squashing my sciatic nerve in the process where the scar tissue has built up around it to prevent any healing.
I’ll know Wednesday how my liver/kidney levels are and talk to my GP and make a decision, I think if my levels are okay I’ll give it a shot. The amount of pills/injections is quite sobering.
Did get some good news, my bloodwork from the haematologist came back and I am only in the 5% of people with too much protein in my blood and not the 1% with dangerously high levels that lead to disease. So I just have to go in once a year for testing to make sure I stay in the 5%.
So far…so good!
I’m experiencing a bit of hair loss but can’t tell if it’s the drugs or just normal winter shedding.
I started the daily Leflunomide on Dec.12 and paired with the weekly methotrexate I have noticed a marked improvement in the inflamatory pain, I have not had a flare up since the last week of November and my pain level that was a constant 8-9/10 is now teetering at a 5-6/10. I’m walking faster, climbing stairs more easily,etc… I’ve even been able to almost totally wean myself from the Celebrex.
I go for my shot on Wednesdays and am exhausted from Thursday to Saturday, feel pretty good for the rest of the week until the few days after the next shot, it’s like clockwork each week. I can’t taste food as well, stomach gets upset, I get somewhat dizzy and have a bit of chemo brain but am hoping these side effects wil lessen over time.
I still have/get painful nodules and the Synovitus can still be quite painful at times but overall I am feeling better and this will hopefully prevent any future damage.
Both RA and GP are pushing the flu shot because my immune system is down but I have always had a weak immune system and am very skeptical of getting the shot in fear that it will make me sick. I’m waiting on bloodwork to see where my immune system is before agreeing to it.
