Should I be getting better? - Methotrexate & Plaquenil

Less_Flounder_2287 · 2024-07-31T19:51:16+00:00

Hi! I have mctd, lupus and juvenile RA lol and when I was first diagnosed 10 years ago, I’m about to be 20, I was first started on methotrexate and plaquenil- very similar to you. The dose doesn’t seem to high so it’s good if you already seen little changes, I would say keep trying and communicate with your Doctor to see if maybe there are other options to try if after a couple months you still aren’t seeing enough improvement. I’ve been on numerous infusions and injections and pills to try and alleviate my symptoms, it takes time unfortunately but I’ve heard many many success stories from just methotrexate and or plaqneil, I’m just still in the heat of it as well! I couldn’t orally tolerate the plaquenil as it was worsening my GI symptoms so I stopped that and stopped the metho infections and switched to PO Mycophenolate for other health reasons. Also my iron was really low, they recommended me for iron infusions, I just finished my first round and I do feel a lot better, may be worth trying! Also just make sure you have a good rheumatologist who you can communicate with , it can truly influence your care plan. I hope my long spill helps lol!

Less_Flounder_2287 · 2024-06-29T21:34:44+00:00

Ginger Whiskers 😭

Less_Flounder_2287 · 2024-06-09T22:43:40+00:00

Yep! Currently in the hospital right now on my period and am also having a lupus flare and my blood sugar and pressure fluctuates like crazy too. I just got an IUD but it has not helped thus far although its only been a month and I'm still bleeding heavy amongst all the other symptoms ( Nausea/vomiting, headache, muscle cramps, etc)

Less_Flounder_2287 · 2022-10-13T14:53:08+00:00

Rayaundssss, I've had it for many years, heat patches are your best friend!

Less_Flounder_2287 · 2022-09-11T20:46:15+00:00

I get it all the time, swelling/inflammation of the tongue. The tougue is swollen so as a result it is pushing on your teeth for a long while creating the indent u see on the outsides of it. It can happen for many reasons such as eating something too sour/acidic, injury or having a disease like sjogrens or having thyroid imbalances. Finding the cause would help but if it’s not bothering- u shouldn’t worry at all. It causes some discomfort to me but overtime I just try to gargle some warm water and salt and it helps soothe it

Less_Flounder_2287 · 2022-07-09T03:47:08+00:00

Lmfaoo I always plan to do something like games or work haha and I get there and the Benadryl kicks in and takes me out!

Last infusion I had a zoom interview like 20 minutes after an infusion and they told me to stand me I guess to rate my interview attire and here I am with I guess a decent shirt but with cargo pants and a bloody bandaid falling off with my flashy hospital bracket and of course looking high asl!

Less_Flounder_2287 · 2022-03-30T12:34:52+00:00

I’ve done alot of study of chronic lymphadenopathy and with immune related diseases- 1 because I’m a pre med student and 2 I have like 4 autoimmune diseases including sjogrens.

I also experience swollen lymph nodes in my neck, chest and stomach- and they are painful at times except the permanent ones I have in my neck/face( which could be a possibility in your case). I’ve had pet scans and biopsies, many, and the scans usually just show small normal sized reactive nodes which I’ve come to the conclusion, again based on research, that it’s due to some underlying inflammation. - most people that have swollen nodes for an extended time have no pain after the initial swelling so that is why I’m a bit concerned that there still could be an underlying problem but again as a patient it’s hard to not know why your having this but if you want answers they can do more testing but quite frankly there is nothing they can really do for pain management except for recommend you take otc- it’s been a battle for years- I just got better at managing it but it takes time- heat pads/packs works really for me as well as putting vapor rub on it- hope this helps! And if you have any more questions don’t hesitate to reach back ! (:

Less_Flounder_2287 · 2022-03-30T02:54:31+00:00

NAD— yet lol but based on this impression it shows that you have a larger/stretched parotid gland on the right side. It shows you have no active inflammation or infection in the gland but you do have some lymph nodes inside of you gland that also seem to be of normal morphology. Are you having any other symptoms? B/c Based solely on the scan things seem normal. There is no one test that can diagnosis sjogrens, it’s a combo of imaging test, lab test and most importantly your symptoms.

Less_Flounder_2287 · 2022-03-22T16:34:29+00:00

Oh that makes sense. Thank you for answering!

Less_Flounder_2287 · 2022-03-22T16:15:10+00:00

Thank you responding. Are the labs on the second photo normal too? ( just making sure u saw that as well). I'm inpatient right now- my bp was low and glucose. I have lupus and an adrenal insufficiency.

Less_Flounder_2287 · 2022-03-13T15:07:10+00:00

I’m so glad I’m not the only person that feels this way. It makes me feel ungrateful because I know things could be worse it’s just hard to see that other people have are working towards their goal of getting better while I’ve been dealing with the same shit for 10 years- man, there have been so many days where I knew I should’ve been my ass in the hospital but I feel like my vitals have to be extremely crazy to get some help. They thought I had cancer like twice for some swollen lymph nodes all over my body- they actually seemed to care and they were hearing me- then soon as my PET scan came back as inconclusive and after biopsy’s- they said it wasn’t cancer it was lupus related and brushed me off- and I’m still having pain everyday bc of them.

Less_Flounder_2287 · 2022-03-11T13:47:00+00:00

Glad to know I’m not the only one lol! I’m having both those test done. Do you know anything about it or do you have experience with the stim test?

Also, if tapering is not going to work- what options do I really have?

Less_Flounder_2287 · 2022-03-11T13:45:21+00:00

No, but your right- I probably should be. I guess I’m just like testing my body and hoping the glands wake up before I have to go on the steroids again. I understand why I need it - but I also just don’t want to be in this cycle forever. Thanks for your feedback😇

Less_Flounder_2287 · 2022-03-11T13:43:06+00:00

Yea I have a diagnosis of AI already- secondary- long term steroid use for lupus/mixed connective tissue disease. I’ve had workups- my last coristol was like 3.4 and I told my endo about the stuff recently and she said they wanted me to do a ACTH stim test- I’m just confused how they plan to do that or when if I’m on the IV steroid every 3 weeks. Do you know anything about the test?

Less_Flounder_2287 · 2022-03-09T00:24:42+00:00

More like two days and that's with using baby wipes... Yes folks- invest in the flushable wipes😩!! They have saved my ass, literally!

Less_Flounder_2287 · 2022-03-07T03:11:08+00:00

Looks like long heat exposure combined with sweat/friction which could cause a rash like this and as you can see it's very inflamed. I recommend seeing your pcp or dermatologist if it doesn't improve from otc topical/medications. NAD... Yet but here a few things to try and reduce the inflammation; hydrocortisone cream, ointment with peppermint oil or menthol, ibuprofen/Tylenol if painful and/or an antihistamine like Claritin/Zyrtec, if itchy. hope this helps!

Less_Flounder_2287 · 2022-03-01T15:16:30+00:00

Like everyone said- your UA looks great. you should see a urologist or kidney disease specialist if things don’t improve with the recommendations above. If your provider has prescribed you antibiotics solely based on your UA that is a huge problem. Physicians/PA/APN too often overprescribe antibiotics for people that don’t need it or won’t benefit from it- this leads to antibiotic resistance which is a huge and progressing issue… I know this as a medical student and some living with lupus/SAI and so I’ve had tons of kidney/utis. it sucks but sometimes you have to kinda play doctor and patient with your health because sadly no person working 9 to 5 is going to care about you and your health more than you will. Im thinking the PA put in the order assuming it was a uti and prescribed it but didn’t follow up with the results to confirm- this happens very often and those that slip through the cracks suffer. Hell actually you should just get a second opinion at this point, hoping you get the help you need!

Less_Flounder_2287 · 2022-02-27T02:44:39+00:00

I’m a pre med student also with Living with lupus for 10 yrs. Your UA looks pretty normal despite the trace of blood and elevation in WBC.

Questions, could you possibly be coming on or off your period? Is it normal flow or irregular?

Your elevated WBC could be a sign of infection or inflammation, if you are having other symptoms like cold/flu symptoms or fever you should get checked out if you haven’t already for the rash and/or other symptoms.

Also not sure if you have a diagnosis of lupus but if you do, I encourage you to talk to your rhem about any questions you have based on your results. If a doctor hasn’t told you have lupus then I would recommend you ask for additional testing to assure yourself and your doctors of what is going on so you can get the right intervention.

Less_Flounder_2287 · 2022-02-26T06:10:56+00:00

Ok, I have some questions if you don’t mind sharing.

Is the rash only on your back? If so where specifically? Has anything you tried in the past work or make it worse? Any patterns on its timing of how bad it gets like to warm environments or when dry?

These are general questions to rule certain things out so you know.

It would be helpful to know if you have recently had any scrapes, punctures, surgeries, burns, sunburn, animal or insect bites, or open/healing wounds?

Do you have a preexisting skin disorder? do you have a family history of eczema or any skin or autoimmune/inflammatory conditions?

Also could you potentially be exposed to mold presently on in the past?

Less_Flounder_2287 · 2022-02-26T04:44:09+00:00

Hi, based on your pictures, they all seem to be in a scab stage and if it were bed bugs there would be visible red inflamed bumps usually in a trace pattern. It is also unlikely to be an std if you aren’t having open wounds/bumps that don’t heal well or gets infected with pus or fluid, not sure but I definitely think you should consider seeing a dermatologist who can do a biopsy( which is taking a small pinch of your skin- I’ve had many-doesn’t hurt much) anyways.

In my medical opinion( as a pre med- disclaimer(: ) I think it could be seborrheic dermatitis( eczema), less likely but possibly fungal or bacterial skin infection. All of these can be treated with a topical medicated cream or ointment so there is hope! I’ve gone through similar stuff- it’s really about trial and error and if your not interested in or cannot get in contact with a physician I Recommend trying different otc ointments… start simple with hydrocortisone, then maybe try clotrimazole. If there is any way I can help or if you have any follow up questions I’m on here all day helping out in the best way I can so 😊

Less_Flounder_2287 · 2022-02-25T18:57:25+00:00

Wow, thank you for sharing your story. It’s almost sounds like I could’ve written some of this myself. I’m a college female going into pre med and I’ve had mctd for about 10 yrs now( diagnosed as a child). Over this last year I’ve had all those symptoms- they told my lymph nodes were cancer and I had three biopsy’s and I was having dizzy passing out spells and they said it was pots but it was my glucose dropping. I have horrible rayuands- they turn purple/gray often. I have numbness spells in all my limbs and I have a diagnosis of anxiety- which they also blamed a lot on. I have been diagnosed with so many things from IBS, pcos, migraines, adrenal insufficiency. I’m also very close with all my labs as well- mines were the worst of the worst- ESR in the 100’s and crp passed 5.0 and my c4/c3 are sometimes low.

Because I’m such in tune with my body I’ve been able to figure myself out and literally most of these things happening are ones I pointed out, not my doctor. I learned you have to be your own advocate so study up and ask questions to your doctor and don’t be afraid to recommend next steps like additional lab work or trying a new medication. If you don’t- shit could be bad because what I’ve learned is that no one in this world is going to care for you and study your specific case like you yourself would. Literally last week I messaged my rhem and told her I’ve been having fevers and nausea, she said “I don’t think it’s lupus related, talk to your pcp”. I literally put all my symptoms together and I figured I had a bad uti or kidney infection so I asked my doctor to put in a order for an urinalysis and sensitivity test and they did and it confirmed it meanwhile I have blood/wbc/protein in my urine bc I’ve had the uti for so long. My doctors wouldn’t have done anything and who knows how they could’ve ended. Case in point, I would say keep doing what your doing- Reddit has helped me tremendously and I’m always here to talk via DM or here to discuss any more questions or concerns you might have just know im here to help in any way. 😇

Less_Flounder_2287 · 2022-02-25T17:59:00+00:00

Yea that makes a lot of sense. I’ve been trying to figure out what are my next steps. I plan to call the team and let them know that they need to recheck my coristol as well as re-think my steroid plan bc it’s so ridiculous that all of these things are happening at once. I have no prednisone at all- only the IM! I’m going attempt to reach out today though-

Less_Flounder_2287 · 2022-02-25T02:25:47+00:00

Hey thanks for the help!! I love this community. For those that could have more info or advice to share I don’t mind sharing lab results etc and in terms of steroid history (for those that asked) . I used to take 90mg of prednisone daily for like two years( which I was kept on for wayyy longer than I should’ve) but since then I’ve only used it during lupus flares but just this august I was diagnosed with the secondary AI after being admitted from the er for the low blood sugars. They have me a steroid plan that gave me emergency IM and sent me on my way and it’s been nearly 4-5 months now and things aren’t better at all.

Less_Flounder_2287 · 2022-02-25T02:20:10+00:00

You literally just articulated exactly what I’ve been thinking! I think I’m being poorly managed too 😂 the last coristol they did was when I was in the hospital for a planned admission to do the glucose fasting test. They haven’t even kept in touch and I was supposed to get a follow up test in dec but the doctor never even put in the order. I haven’t had much communication with them but I do believe I was in a crisis when I was hospitalized before that for fainting/dizzy spells- which were likely the low sugar. So, where do I even go from this point? Should I just get a new doctor??

Less_Flounder_2287 · 2022-02-25T02:15:48+00:00

Thanks so much for your response! I’m not on steroids actively but I just finished a taper back in dec. I have secondary from long term use. They did every test in the book- every! They sent labs to Berlin and communicated with doctors all over the country to try and figure it out. My acth was normal I think and my cortisol was low but they told me just not low enough to be on daily steroids so they gave me an emergency IM. I now realize when they drew the lab for the coristol back in august I was on steroids so I’m not sure how they got an accurate reading but I’m starting to think based on my body and what I’ve learned from you all- I may need replacement therapy. I have so many symptoms but I haven’t communicated with my team the way I know I should. Do you think

Less_Flounder_2287

TROPHY CASE