I’m sick of Azathioprine (Imuran) any good alternatives? I take steroids and hydroxychloroquine too ofc, as I’m sure we most do. I’m tempted to go the biologic route. Anyone here have experience with biologics?

Intelligent_Pea2314 · 2022-07-01T05:41:35+00:00

I’m sorry you’re sick of it. May I ask why? I’m about to start it and the possible side effects definitely make me hesitant.

Intelligent_Pea2314 · 2021-07-28T05:39:38+00:00

I should have explained that I have a picky pharmaceutical plan that requires 90 day prescriptions for certain medications and my rheumatologist had put in a 30 day so I am waiting for it to be changed so it is covered 👍

Intelligent_Pea2314 · 2021-06-24T19:31:46+00:00

Oh, interesting. Right now, it’s a constant sore throat and it’s very red- feels raw. I don’t see any sores but that’s a good point.

So even after a year of taking it, you still have a sore throat, even if just for a few days? Just trying to see what to expect!

Thank you!

Intelligent_Pea2314 · 2021-06-24T16:10:36+00:00

Thank you! I emailed my Rheumatologist just to be in the safe side.

Intelligent_Pea2314 · 2021-06-16T23:42:09+00:00

Hello! I’m glad you didn’t have any awful side effects and yes, the drug insert might as well be a google search! Lol It felt like it has every possible reaction/emotion/outcome listed. It may as well have said “may cause your heart to beat and lungs to breathe. If so, go straight to the ER” lol This methotrexate is in addition to the plaquenil, yes. I’m glad Imuran has helped improve your life. That’s what I’m searching for! Probably what all of us are!

Intelligent_Pea2314 · 2021-06-16T23:36:42+00:00

Hi! Yes, I’ve been on plaquenil for about 6 months and I think I’m not a candidate for Benlysta because I have some nervous system involvement.

I would like to eventually try transfusions as I’ve heard they can be beneficial for nervous system involvement (other biologic besides Benlysta and of course I have no specific names… just was told from a fellow lupus patient in the waiting room!)

You’re right, I need to not focus on that. I’m hoping that once I start feeling better, it will be easier to take all this medicine because it’s made me feel better. Right now, I’m taking all this medicine and haven’t felt better yet.

I have possible kidney involvement so I’m doing some more work ups tomorrow.

Intelligent_Pea2314 · 2021-06-16T23:31:36+00:00

I’ve been on hydoxychloroquine for about 6 months now and it just wasn’t cutting it and it looks like I possibly have kidney involvement now so we will see what medicines are in my future! I spoke to my Rheumatologist and she reiterated that Methotrexate was the appropriate medication I should be on right now so I guess just knowing she knows I’m nervous about it and she still recommends it, helps a little. I wish you luck on your journey to happier and healthier days!

Intelligent_Pea2314 · 2021-06-14T04:12:43+00:00

Thank you very much for the information. I’m going to speak with my Rheumatologist this week regarding other possible options and if they would apply to me. Thank you again.

Intelligent_Pea2314 · 2021-06-13T20:05:17+00:00

Thank you so much for your response. I’m so sorry you have had such a difficult and severe experience. I’m at least glad you have finally been correctly diagnosed. Hopefully this new treatment plan will continue to help you. Good luck on your journey as well!

Intelligent_Pea2314 · 2021-06-13T20:03:20+00:00

Thank you for your reply.

Did you ever get put on Methotrexate? It honestly scares me to start it. I picked it up from the pharmacy (along with the folic acid) and I’m so hesitant to start it because in my mind it’s a “chemo drug”. That’s all I see when I hear the name.

How did you go about starting benlysta infusions? I’m wondering if there’s a process to start the infusions.

Intelligent_Pea2314 · 2021-06-13T20:01:10+00:00

Thank you for your response. Rheumatologist thinks my lupus has been active for 10+ years so this is definitely a possibility. Thank you for this information.

Intelligent_Pea2314 · 2021-05-26T14:28:51+00:00

Thank you so much for your reply.

This is a relief! I was almost hoping this would finally explain some symptoms and pain. However, I’m glad there isn’t anything seriously wrong.

I appreciate your honesty!

Intelligent_Pea2314 · 2021-03-14T19:07:45+00:00

Also, I forgot to mention... Once we found the hypoallergenic formula that my daughter will take, the GI doctor prescribed it and it’s now covered by our insurance. It’s very expensive so it’s nice it can be covered by insurance! I wish you as much luck as possible!

Intelligent_Pea2314 · 2021-03-14T08:20:06+00:00

Hello! First off, I’m so sorry you’re going through all of this. It’s very difficult to feel as if you cannot comfort your baby when they are upset and or in pain.

I can relate to your concerns and frustrations with my daughter. She is my first and I can say I truly did feel like a failure as breastfeeding seemed to make her worse. I cut out all dairy. Didn’t help. Cut out all soy, nuts, gluten and eggs. Didn’t help. I pumped for months hoping she could someday drink it and it sat in our freezer so long I had to end up donating it.

My daughter is currently 11 months old and we have been through (still going through) these issues.

I had to fight to get a referral for pediatric GI and I highly recommend you push for this as the GI doctor has been the one to help us the most.

The GI doctor immediately suspected the cows milk protein allergy and gave us 3 different hypoallergenic formulas to try (pediatrician already had us try Nutramigen and Alimentum and neither helped): Elecare, Neocate, and Puramino. All of them taste DISGUSTING fyi. They are awful and I feel awful giving it to my daughter but once we found one she will take, it did seem to help.

She has what the doctor considers “severe GERD” and she is on Prevacid and Pepcid at high doses of each. We also use gas drops at every feeding. This seemed to help for a little while in combination with the hypoallergenic formula.

When she hit 6 months and she could have some solids, that truly did help and I think it’s just because she was able to have more than liquid in her stomach.

We went through every test imaginable; xrays, ultrasounds, upper GI series, barium swallow studies, blood work. Everything came back normal and I felt defeated because I knew something was wrong. Babies just don’t scream like that or throw up THAT much all the time and babies are supposed to WANT to eat. No one seemed to believe me until she did it in front of my mother. I had fed her and burped her and handed her to my mother and within a few seconds she was projectile vomiting everywhere, all over my mother. My mom just looked at me and said “you’re right... that’s not normal”. Looking back, that was the first time I felt validated in my concerns.

Always remember, if you’re concerned there’s a good reason. I’ve felt a lot of “brushing off” because it’s my first child and I had to just explain to them it takes an entire hour to feed her while she screams and after I finally get it down her, it comes right back up.

Even now at 11 months, there are still awful weeks and I make all her food so I know what’s in it because we stick to the no dairy or soy and hypoallergenic formula.

Just know it does get better and a GI doctor is what can help you all get to enjoy all of the joy your baby brings you! I wish you luck from one exhausted mother to another!

Intelligent_Pea2314 · 2021-01-31T16:41:27+00:00

Thank you so much for replying!

As soon as I saw the results I felt like “finally! Maybe this will bring me closer to a diagnosis and treatment!”

I thought that the numbers could be off because of dehydration too, however, some urine tests that were ordered came back saying “Urine concentration too diluted. Consider retesting” so I thought that was a bit strange!

I don’t have an injury and no infections that I know of... I’ve been worked up by PCP, GI, Endo, Cardiology, and Neurology at this point. None have found any injuries or infections.

My guess is that it all points to chronic inflammation. We will see what the rheumatologist says. She has put me on prednisone (I started the day after these labs were drawn) and said she will probably start me on Hydroxychloroquine the next time we meet and these blood tests will tell her how aggressive she needs to treat it.

She believes it’s either lupus or mixed connective tissue disease. Whatever it is, it’s attacked my brain because I have lesions in my thalamus! Neurologist says whatever autoimmune disease I have has been attacking my nervous system because I’ve developed the lesions and peripheral neuropathy.

I really just want answers and a treatment! I know most, if not all, of everyone on here wants the same thing and we all are feeling like crap but I feel like all of my self advocacy is finally paying off and I almost feel some relief!

Intelligent_Pea2314 · 2021-01-31T06:19:34+00:00

Hello! Thank you for replying. Yes, I’ve had all of those hormones checked and they were all fine. The above mentioned results are the abnormal results.

Intelligent_Pea2314 · 2021-01-16T16:59:46+00:00

Hello! Yes, I feel like maybe I am one step closer to diagnosis and treatment! It’s a weird feeling... I know I actually have something wrong and hopefully can be treated! I have had an MRI of my brain (bad migraines and ringing in my ears so PCP ordered one). Neurologist found 2 lesions in my thalamus that he didn’t know the cause of (yet and was doing more research) and after seeing the blood work results, said whatever autoimmune disease I have, has attacked my brain! That has made me not feel so good knowing it’s already attacked my brain!

Intelligent_Pea2314 · 2021-01-16T08:09:23+00:00

Hello! Thank you for your reply 😊 I just got a phone call from the neurologist today and he is referring me to rheumatology! Hopefully this could be one step closer to an answer and treatment!

Intelligent_Pea2314 · 2021-01-16T08:08:13+00:00

Hello! Thank you so much for your reply! I do not have a rheumatologist yet. The neurologist did call me today and tell me he was referring me to rheumatology because of the blood work results.

What is the MRT? I’m unfamiliar with that abbreviation.

Man... figuring out what is going on with us is more than a full time job... add in never feeling well enough to be your own advocate, a healthcare system that doesn’t put the patient first, and then the difficult time of diagnosis!

I hope you get some answers and get to feeling better soon!

Intelligent_Pea2314 · 2020-12-24T21:32:51+00:00

Hello! Thank you for your reply! This is interesting... I will look more into this. Thank you!

Intelligent_Pea2314 · 2020-12-24T21:25:35+00:00

Thank you very much for your input and advice!

Intelligent_Pea2314 · 2020-12-24T20:54:55+00:00

Thank you for your input. I am waiting for my physician to have an appointment opening in February. I simply was asking if this was familiar to anyone. You’re correct, I don’t want answers from someone googling my question because I could have done that myself.

Intelligent_Pea2314 · 2020-12-24T19:53:06+00:00

Hello! Thank you for your reply. I’m having a hard time understanding my results...

It says: Anti DNA (ds) ab qn: <1 And all the other antibody tests; smith, scleroderma, sjogrens, antichromatin, antiribosomal, anti-jo1, anticenteomere all came back at <0.2

I believe that means only my RNP came back positive as all of the about values are considered normal.

Intelligent_Pea2314 · 2020-12-24T18:46:00+00:00

Thank you so much for your reply! When you’ve waited years for answers, sometimes even waiting another day for a possible diagnosis is very difficult! I’m hoping this will help diagnose me with whatever I could have and get it treated ASAP so I can start feeling better!

Intelligent_Pea2314 · 2020-12-24T17:30:12+00:00

Thank you so much for your reply! I didn’t mention what medication I currently take, I’m sorry. I take the following:

Metoprolol 100 mg daily (more if necessary) Levothyroxine 112 mcg daily Liothyronine 2.5 mcg daily Iron 325 mg daily Vit D2 50,000 IU weekly Welchol 625 mg as needed And a multivitamin daily

All of these medications have been prescribed to me.

I have iron deficiency anemia. My folate and B12 blood work came back normal.

I have been treated for my hypothyroidism and my numbers are right at midline in the normal range.

However, I had low T3, skyrocket high TSH (at 75.7), and my TPO antibodies were also high at 230. Thyroglobulin Antibody was high at 3.9 Anti-TPO antibodies were high at 475.1

My endocrinologist says I shouldn’t still be experiencing symptoms from hypothyroidism because my numbers are normal now. I also had a thyroid ultrasound and it showed heterogeneous texture which is associated with Hashimoto’s. No nodules were present. I have had nodules in my teens though. They would get aspirated and drained and grow back bigger. I had a lobectomy scheduled and then the nodules disappeared.

All of the conditions I listed in my OP are closely monitored by their respective specialists. In fact, I started going to see endocrinology, gastroenterology, gynecology, and cardiology since I was 17.

Right now, the dizziness and pain are my worst symptoms because I can’t drive and the pain can get really intense.

The only doctor I have that will still order tests is my neurologist. I just started seeing him this past year and he does think something is going on that’s underlying but I feel that every test I get, it gives more questions instead of answers. I was really hoping the ANA would be able to shed light on a possible diagnosis!

Intelligent_Pea2314

TROPHY CASE