What can cause ANA titre of 1:2560?

I was diagnosed with Dermatomyositis with MDA5 antigens and with interstitial Lung Disease in January of 2021, my rheumatologist wanted me to get on Cellcept. Medicare and my insurance company BCBS wouldn’t pay for it, my doctor appealed it three times. The reason they gave for denying the appeal was, because it had not been approved by the FDA to treat Dermatomyositis. So I am wondering how you were able to get Cellcept. I would like to find a way to get Cellcept.
Thank You, Kathryn

Hi @cathiz, welcome. @daisydo also has scleroderma. You may both be interested in these discussions:
- Starting cellcept for scleroderma: How does it work? Side effects? https://connect.mayoclinic.org/discussion/starting-cellcept/
- Scleroderma, Limited https://connect.mayoclinic.org/discussion/scleroderma-limited/
- Video Q&A about Scleroderma https://connect.mayoclinic.org/event/video-qa-about-scleroderma/

Your experiences would be most welcome to fellow members

Hi @carpe_bean
I have a high ANA titre also and after further testing my Rheumatologist discovered I have systemic scleroderma. She immediately started me on CellCept and I am doing great now. It took 6 weeks for the medicine to get enough in my system to really start working but when it did it was like night and day difference from one day to the next. They caught mine in the beginning and it sounds like that is the key, even though it sounds like others that have started on CellCept also have had good benefits also. Hope this helps! @cathiz

@daisydo. You're right. Lupus never goes away, but it does go into remission. For some, Lupus can go into remission for years.

@pacer3702 That's a good question about MFR. The physical therapist who wrote the article seems to be more of a traditional PT, so I don't think he completely understands MFR. If you try MFR once and stop, there wouldn't be much benefit. There are many layers of fascia to work through, so it may take weeks or months depending on how bad it is, but you need to keep it moving. I do a lot of stretching at home to maintain what I have gained.

Think of it this way. Remember when you were a kid and were much more flexible? Everything in your body moved and you were probably more active running around outside. Then we get older and sit too much and stop moving a lot. If you have an injury, the body tightens up. Even habits like always sleeping in the same position can lead to restrictions and we develop a pattern and can't move like we used to do. Stress adds tightness to our bodies, and surgery creates scar tissue not just on the skin, but in the fascial layers. When fascia stops moving, our bodies get stiff and we don't move as well. We can loose proper alignment of the spine, shoulders and pelvis. The small spaces where nerves and blood vessels pass between muscles can get pulled and compressed by tight fascia. That is what happens to me with compression points between the rib cage and collar bone for nerves that go to my arm because of thoracic outlet syndrome. Bones will go where they are pulled by muscles and tight fascia. In my case, I have tightness in the front of my neck and chest from thoracic outlet syndrome which really extends from my jaw down through my neck, rib cage and to my pelvis. Because that is too tight, it pulls the left Illium bone (hip bone) forward or inflared toward the center of my body. I have muscles in the low back that connect the spine to the pelvis that should be holding it on place, but those might be weaker from sitting too much, so the tight muscles on the front of my body win the fight and the hip bone moves forward and out of alignment and the joints are allowing the movement. Those muscles in the low back complain because they are being stretched and beat up. So the answer would be to release the fascial and muscle tightness in front, and strengthen the back to keep the pelvis aligned as it should be. Having a wider pelvis as a woman, makes it easier to twist out of shape because it is designed to be able to expand a bit for childbirth. That is a simple explanation and there are other muscles involved too, but they work in opposition to muscles that act on the other side of the bone where they attach.

Walking is great exercise for the back and pelvis and riding a horse at a walk does the same movement, but with a larger motion. In therapy this is used for patients who cannot walk to try to strengthen muscles they would need for walking and core strength. Waking a horse does not cause the rider to bounce, but you have to counter the motion with flexibility in the back. It is the same thing you do when you walk, but I think you get more effort and exercise onboard the horse if you are doing it right with good posture. You would have to try it to see if you think it helps. I think it may get things moving better because of bigger movements than walking on your own and you don't have the pressure of the footfall jamming your leg upward into the pelvis. I sometimes get an upslip like that where one leg becomes "shorter". My therapist will pull on my leg as I lay on the table. Think about what you do with really vigorous walking with big steps at a faster pace. That is similar to being on a horse, but you don't have to contend with numbness of your foot and worrying about if it will give out when you step on it.

I used to have physical therapy 2 or 3 times a week at the beginning and I do it once a week now. I have been doing PT for several years because of the TOS which is a hard problem to correct, and horse back riding does a lot to help because I have much better posture and core strength.. I think that waiting 3 weeks for a next PT appointment is too long because the pelvis can revert back to old habits too quickly. You might ask your PT if more frequent sessions would be more beneficial if your insurance covers it. If walking really helps I would keep doing it, but also remember to stretch and ask your PT the best ways to do that.

Here is something else you could ask your PT about. This can align the sacrum is if goes out just by laying on it. My pelvis can push the sacrum out too and this has helped me. https://www.sacrowedgy.com/store/

Thank you for your comments about the portrait of my surgeon. I really enjoyed painting that for him, and it was a big test for me as I was recovering because I needed to prove to myself that I could regain the coordination I had lost because of the spine problem. His surgery gave me back that ability and I could not think of a better way to express my gratitude.

Did you have any more thoughts about horse therapy? It may add a benefit to what your physical therapist is doing for you.

Both my oncologist and dermatologist wanted to prescribe me a steroidal cream for the side effect rash from Revlimid that appeared on my lower legs. Nope!! Not going there. Cleared it up with Vitamin E cream alternating with CBD cream. I also take a baby aspirin per day, plus once a week 20 mg of dexamthasone as part of my chemo regimen.
Ginger

PS. I have had to take steroid eye drops to combat the uveitis attacks, but that's not quite the same as taking it orally, even though a small amount ends up in the blood.

Thanks Ginger. I have already shown them both the research that showed that the difference in whether MGUS converts to multiple myeloma - or doesn't, depends on whether the body can mount an immune response to the SOX-2 on the MGUS/myeloma stem cells. So unless and until the good portion of my immune system shows that it's truly failing already, to fight the MGUC cells and keep them at a steady state, I won't be taking any immune suppressants stronger than baby aspirin.

Hi Jennifer (not Janet),
Thank you for this additional information. I had read the article on Lumbar Plexus Compression Syndrome that you provided and it is fantastic! Thank you for sharing. A couple more questions: The article seems to discourage myofascial release for these health conditions (states that MFR has only temporary benefits), but you have found MFR to be of benefit. I would appreciate your insight. Also, horseback riding would be a fun way to recover, but I'm concerned about the bouncing action on my SI joints. If you just keep the horse at a walk, is the motion relatively minor? (It's a long time since I have been on a horse!) I have had one PT session that specifically addressed realigning the pelvis, which helped me a lot. Unfortunately, there is a 3 week wait until the next appointment. I'm wearing an SI joint belt daily, which also helps. Finally, I'm finding walking really helps.
Congratulations on the beautiful painting of your surgeon! You are so talented!

@daisydo Get your hematologist and rheumatologist to communicate with each other, and work together to handle your case! It is crucial to your health! From what you have related here, you are not one to stand on the sideline, so having them understand you are looking at all the interactions may have them step up their interest.

I have had to do that with my oncologist and nephrologist.
Ginger