The doctor I saw today (a young resident on exchange from another country, he was under 30 easy, never saw me before, spoke to me for 15 minutes) - before I left he crouched down in front of my chair, looked at me all serious, and told me I should just get used to living like this with chronic pain and not expect anything to be done for me beyond this.
I'll survive the weekend sure, but I literally cannot eat and probably am not drinking optimally either, so I'm not sure what the heck to do :shifty-t: Will get in touch with my GI clinic Monday when they open, but yeah pretty much the ER seemed to assume I was anxious. Which I guess I was a little bit because I couldn't BREATHE, but I wasn't like... panicky, really. Just reasonably concerned considering the situation. I was pushy for once, honestly, and my mother was there too near-tears worried about them sending me home in that condition, but they wouldn't budge. At least my motility specialist at the GI clinic understands the problem and has never not believed me, but the ER wouldn't even send down a GI consult, so it was a bust. My specialist is on vacation until sometime at the end of next week too, so..
I'm sorry to hear of all the trouble you are having, Honey. You are a really nice person and you can come here to talk to me any time. Hugs.
Warms a cold heart haha. Very interesting article as well, I might actually make one of my doctors read it. Still planning my trip abroad, combination medical care and vacation, so hopefully I'll be able to see someone with more experience in the field.
❤
.
Did you get to see the new rheumatologist MissLeopard83? How did it go? Hope your hands are feeling better now.
I can't remember which state you're in but it's starting to get colder here (it's around 55 degrees F), and my younger daughter has been complaining about very stiff and painful fingers, wrists and elbows. It makes even typing hard
I hope the new rheum has some good ideas for your hands!!
MTX is used for SLE sometimes. You don't have a formal SLE diagnosis yet, right? You're currently dxed with MCTD (Mixed Connective Tissue Disease), right? That may be why the rheumatologist is unwilling to use anything else.
I actually have a diagnosis of Undifferentiated Connective Tissue Disease but meet at least 4 of the 11 criteria specified for SLE - photosensitivity, positive ANA, butterfly rash, arthritis, and anemia.
Though frankly, I don't know what safer options would be - MTX is pretty safe. It can be hard to take due to side effects, but it certainly is safer than Imuran. What other options did you read about?
I was focusing on meds that didn't cause a risk of lymphoma. There's a few out there, but I don't know if they are available to me. I still need to do some research.
I would certainly stop Plaquenil if you're allergic to it - I can't believe she missed that and is now telling you to continue with it? Does she think it's a side effect or an actual allergy? Because if the rashes are a side effect, they may be annoying but the med would be safe to take.
If it's an actual drug allergy, the medication should be stopped because your allergic reaction may be an itchy rash now, but it could at any point become worse and you don't want to go into anaphylaxis. At least, that is my understanding of drug allergies.
When I asked her if the Plaquenil could be causing the rashes, she said it might be an allergy. She originally had me on a dose of 1.5 pills (300mg) and lowered it to 1 pill (200mg). The rashes persisted even after the lower dose. Once I stopped, they started disappearing.
I wasn't aware Plaquenil was a sulfa drug - are you sure it is? It is not listed in any of the lists of sulfa drugs that I have seen. So I looked it up and I found that it is NOT a sulfa drug. Sulfa is not the same as Sulfites or Sulfates. Plaquenil is Hydroxychloroquine sulfate.
It does cause rashes, but in one of studies done, people with SLE who had sulfa allergies did not develop side effects.
That may be why your rheumatologist did not take you off Plaquenil immediately.
That's what the rheumatologist told me. However, when I looked it up last night, it's much more likely that I have either an allergy or sensitivity to quinine. My aunt cannot take it, either, due to an allergy.
Here is some info: https://www.healthline.com/health/allergies/sulfa-sulfite#sulfa-allergy
Here is one study: https://jamanetwork.com/journals/jamadermatology/fullarticle/478952
It is fairly common to need Zofran with MTX. We were told to give it half an hour before MTX and to give MTX right before bed, so my daughters could sleep through the worst of the side effects. Then we gave Zofran again the next day.
Are you on folic acid with the MTX? If not, you absolutely have to be. If you are, how much? You may need a higher dose to prevent side effects.
For hair thinning (again, another common side effect of MTX), upping folic acid might help. You could also try Leucovorin which is folinic acid.
I'm on 1mg of folic acid as prescribed. That's what she gave me at our last appointment.
Biotin also helps with hair thinning and is OTC. Check with your doctor of course, but I would guess you'll be allowed to try it. Both my girls took it with MTX.
I will write more later - have to run.
Unfortunately, biotin interacts with thyroid meds for hypothyroidism. My pharmacist told me to avoid it.
I looked up the difference between UCTD and MCTD and this is what I found.
Yep, I had to do the same research because I had never heard of UCTD. It's kind of ambiguous, really, in that it's more of a guessing game for doctors on which treatments will help your symptoms.
Based on my research, Plaquenil is not a sulfa drug. It has Sulfate in it but that's different from sulfa. It certainly could be the quinine that you're reacting to.
The fact that my current rheumy thought it was a sulfa drug just makes me want to switch even more. I don't know where she got that idea from, but I didn't find anything, either, that said Plaquenil was a sulfa drug.
People do, however, have reactions to quinine.
I definitely understand that you are frustrated with your rheumatologist. Honestly, I don't think she's giving you good information. If she thinks you're allergic to Plaquenil, she should have stopped it immediately.
Honestly, I'm fed up. The whole time, I felt like she was giving me things to shut me up rather than because I really need them. I felt like I was wasting her time, which is not a good feeling. I don't really trust her.
Is there any way you can see a rheumatologist in a university/teaching hospital?
I have HMO insurance so I'm rather limited in who I can see. The rheumatologists that are in my network are connected to faith-based hospitals, mostly, with a handful being at the local university clinic. They do NOT have good reviews.
However, when I met with my primary doctor today, she and I discussed me switching to the rheumy in the same office. She gave me a referral and I was able to schedule an appointment with the new one on Nov. 28th. She also had me sign a release form so that the office could have the information from my current rheumy sent over before my appointment. I love this doctor! She is really on-the-ball!
If you're taking 1 mg of folic acid, you can definitely go up - we upped it to 2 mg daily for my daughter. It did help with side effects - even with hair thinning.
Leucovorin is another option - it's folinic acid and is used as a rescue drug when MTX is given in very high doses (like 1000 mg) for cancer.
A much lower dose of Leucovorin is given 12 or 24 hours after you take MTX. It helps with the side effects. Doctors do not like to use it though unless you are on a high dose because it does make MTX a little less effective.
If the hair thinning continues, I will definitely talk to the new rheumy next month about it.
I can't think of any medications used for Undifferentiated Connective Tissue Disease or MCTD that are safer than MTX. I looked it up and found that NSAIDs, MTX and Imuran were used for UCTD.
What were the meds that you were thinking about?
Since there are no meds specifically for UCTD, it was a little bit of a test to try to find medications that might be an option. Plaquenil kept coming up multiple times. However, I found that Anakinra/Kineret had relatively low side effects listed, which is surprising because it is a biologic drug but works differently than most. It's mainly used for RA but can be used for other autoimmune disorders. Every single website that I looked at had information that was much less worrying to me than MTX. Of course, it's something I'll have to make sure of.
I'm still researching other medications. Benlysta came up several times because it's specific for lupus, but it's very new, very expensive, and very risky. That one is not something I'm very interested in.
Imuran is definitely riskier than MTX in terms of the Lymphoma risk, as well as non-melanoma skin cancer. I worried a lot more when my kiddo was on Imuran vs. MTX. She also got MANY infections on Imuran.
I about did a jaw drop when I saw how many horrendous side effects were associated with Imuran! What a scary medication!
That sounds like it might be an idea, you may actually enjoy your time off more.
Hi i was looking for your update, my symptoms is same as you , celiac disease + joint pain + abdominal pain + loose stool 4 time day, all colonscoopy endoscopy blood test negative, but im waiting to do capsule scopy beacuse and another colonoscopy in may.Hi, everyone! I hope everyone is doing well! I haven't been very active lately because I've been dealing with a lot of different issues - mainly mental health issues - but I'm doing better so I thought it was time for an update.
I saw a new GI doctor and my new rheumatologist on Dec 19th and both appointments were horrible. The new GI was incredibly dismissive and rude. My PCP sent me to a new one so I could get some advice on how to handle my IBS but this woman works in the same office as my old GI (the one I was seeing the first time I posted here) and he treated me like a dog (he must have moved offices because I saw him in a different location). She asked me why I was back when I had all the testing done and there was nothing she could do for me. I explained that I already had a diagnosis and wasn't looking for further tests but my symptoms were worsening and I needed help. She gave me a prescription for a brand new medication which I later found out was not covered at all by my HMO - even with a prior authorization. During that morning, I was having really bad nausea and was close to vomiting several times but I pushed myself to go to that appointment so I could, hopefully, get some answers but it left me feeling even worse. When I left there, I felt emotional and at the end of my rope. I was tired of being dismissed by doctors when I had real symptoms. I wasn't asking for the royal treatment - just to be heard.
Anyway, I called my mom to vent and then went home to lay down because the rheumatology visit wasn't until the afternoon. By the time I had to get up, I was still feeling poorly but, again, I was hoping that the lab work would provide answers or that my rheumatologist would prescribe a course of action. Again, I left feeling defeated because 2 lab tests were missing (they were never completed by the lab company) and she wanted to repeat the urinalysis. I was so emotional that I went out to my car and sobbed. I called my mom again but I couldn't talk because I couldn't stop crying. She asked me if I was thinking about hurting myself and I said "yes," because I was, indeed, feeling suicidal.
The next day, I was admitted to the behavioral health unit of the hospital (voluntarily) at the request of my psychiatrist as she was leaving for Christmas and was worried that I would be unstable and wouldn't be able to help me. I was given two new medications which helped TREMENDOUSLY including a mood stabilizer and, a few weeks later, started intensive outpatient therapy which I am still in. It was the best thing I ever did and my mental health is still improving and I hope to be back to baseline very soon. I was so tired of feeling gloomy and hopeless. Now that my mental health is improving, I am in a much better place to take care of my physical health.
That said, I saw a brand new GI doctor this Wednesday and asked my mom to accompany me because, since what happened at the last one, I was nervous. I shouldn't have been because he was WONDERFUL! Even though I told him I have been diagnosed with IBS since 2004 or 2005, he didn't want to just accept that diagnosis and decided he'd rather do an upper GI endoscopy and colonoscopy on the same day with a pediatric scope so he could visualize as much as possible and then use a capsule endoscopy to scan the rest. I was amazed how nice he was! He was concerned about just letting it go as IBS since my symptoms were worsening and my dad has ulcerative colitis so "better safe than sorry." He also ordered bloodwork for IBD.
Tomorrow, I see my rheumatologist for the follow up and, while I am nervous, I am also happy to see that my blood work has come back so everything is in order. I am almost certain that my MTX will be discontinued because every specific antibody test is normal and I don't feel it's making any difference anyway. I'm not sure if she'll stop the Plaquenil, too, but she did mention getting me off the MTX. My new GI wants me off it if it's not helping my symptoms because it can worsen other organ symptoms like the liver and kidneys. The rheumy discussed putting me on a medication specifically for fibromyalgia since that's what I struggle with most and she mentioned Lyrica. If it will help, I'm all for trying it. I have already tried Cymbalta and Effexor in the past and SNRIs just don't seem to help but Lyrica is in a different class so it works differently.
All in all, I'm doing much better than I was a few months ago.
Any update with your capsule endoscopy
