question?

[Ellen McDonough]

Anyone ever had SAA and developed temporal arteritis when weaning off of Cyclosporin?I have had weird symptoms ever since weaning down. Saw the optholmologist yesterday for double vision and flashes in my left eye vision. Have had ringing in my left era and LOTS of pain in the left temporal artery area x 11 days.Waiting for hematologist input with treatment with Prednisone ---if it s ok to use. Platelets are low so rather questionable to do biopsy of the temporal artery. Also have a new dx of gastroparesis since weaning Cyclosporin. Wondering if my body is under attack mode again since weaning. Any thoughts????

[triumphe64]

How fast did you wean?

[Ellen McDonough]

Coming down from 150mg twice a day[300mg per day] over the coarse of 4 months to now as of 3/1 50mg in am and 25 mg in pm currently.[75mg per day].Supposed to go down again to 25 mg twice per day 4/1 and be off totally 5/1.

[rschem]

I was DX with saa Aug.2008.
I am doing very well,but my Dr has only taper me down to 250mg /day 125am/125pm. Dr says if I were tapered off I may have a relpse and may not recover from a second treatment of ATG.I am tolerating the cyclosporne very well.I don't have the tremmors and mouth sores any more.
Why does Your DR want to taper your doseage?

[Hopeful]

Hi rschem,

You don't want to be on cyclosporine forever as it is known to cause subclinical organ damage and irreversible kidney damage. Typically, people will start tapering after their counts have stabilized at high enough levels for 3+ months. The taper should be done very slowly to reduce the risk of relapse - for example: lowering 25mg every 3 months.

It is a little unusual for a doctor to be the one to be afraid to taper! Ususally it is the patient. Is there a specific reason why your doctor thinks that you are at an increased risk of relapse without cyclopsorine? If not, maybe it's time for a second opinion on this.

[dfantle]

Hello, I'm just at close to 2 weeks following Horse ATG, so way to early to share my cyclo experience however my Dr has said she has some patients who do stay on a low dose of cyclo indefinitely to retain their blood counts, so this makes me think it can be very individual or patient based. It's a very delicate balance.


Regarding your eye issues. Could it be delayed retinal issues for being on the steroids? I had a few funky issues just befor ATG so saw a retinal specialist who saw no issues, but he suggested if I have any flashes to get back to see him ASAP.

Another thought, how's your blood pressure?

Best wishes
Sent from my mobile phone

[MelanieW]

I am 4 weeks post ATG and taking tacrolimus which is a newer drug but does the same thing as cyclo. At last appt. was told I may be on it "indefinitely" to prevent relapse so please keep that in mind.


On an unrelated note, the system told me I had a private message but won't allow me to open it. If anyone would like to send me a private message please email me at
mwelch39@gmail.com

[Neil Cuadra]

Originally Posted by MelanieW

On an unrelated note, the system told me I had a private message but won't allow me to open it.

Melanie,

To read your Private Messages, go to this page. (The same link works for everyone.)

If you still have trouble, please let me know.

[MelanieW]

Thank you = it worked and I was able to get in contact with the person who sent me the private message.

[Ellen McDonough]

I have not been on here for awhile .Thank you for posting replies. I have not been able to taper off because of worsening problems. Had a temporal artery biopsy -normal" . New diagnosis of gastroparesis [the nerves to tell my stomach to empty and intestinal motility are not working]which means vomiting after eating and extreme constipation, and have had joint swelling[knees feet and ankles].Had a purple rash on both calves for awhile. On high dose Prednisone for awhile and now have tapered down to 5 mg and hopefully off in the next few days. I have the temporal headaches back now that Pred dose is down.I think it is some other autoimmune disease that was being treated along with the SAA that now has unmasked itself. Had a bone marrow biopsy today as well as seen rheumatology , gastroenterologist. No one has figured it out.Any ideas on where to possibly go for more diagnostic help I am in Denver and have Kaiser insurance but willing to travel or go anywhere -Mayo ? I just am wanting more of an idea of what is happening so I can get treatment and back on the right track.Now-- I am regretting tapering Cyclosporin.I should have left it alone.
I also got a copy of HLA testing for bone marrow transplant I might have had a few years ago when I was first diagnosed with SAA.My sister matched except for 1 mismatched antigen -I was HLA-0301 VS sister HLA01.What does that mean? We ,matched HLA-B,HLA-C,DRB1allele and DBQ matched.
Thanks again .I look forward to any comments.Ellen

[glitterandlace]

Originally Posted by Ellen McDonough

I have not been on here for awhile .Thank you for posting replies. I have not been able to taper off because of worsening problems. Had a temporal artery biopsy -normal" . New diagnosis of gastroparesis [the nerves to tell my stomach to empty and intestinal motility are not working]which means vomiting after eating and extreme constipation, and have had joint swelling[knees feet and ankles].Had a purple rash on both calves for awhile. On high dose Prednisone for awhile and now have tapered down to 5 mg and hopefully off in the next few days. I have the temporal headaches back now that Pred dose is down.I think it is some other autoimmune disease that was being treated along with the SAA that now has unmasked itself. Had a bone marrow biopsy today as well as seen rheumatology , gastroenterologist. No one has figured it out.Any ideas on where to possibly go for more diagnostic help I am in Denver and have Kaiser insurance but willing to travel or go anywhere -Mayo ? I just am wanting more of an idea of what is happening so I can get treatment and back on the right track.Now-- I am regretting tapering Cyclosporin.I should have left it alone.
I also got a copy of HLA testing for bone marrow transplant I might have had a few years ago when I was first diagnosed with SAA.My sister matched except for 1 mismatched antigen -I was HLA-0301 VS sister HLA01.What does that mean? We ,matched HLA-B,HLA-C,DRB1allele and DBQ matched.
Thanks again .I look forward to any comments.Ellen

Hi,,,,, I had gout towards the end of my treatment with steroids and cyclosporin. It is a side effect of prolonged use of cylcosporin or ANY toxic drug. It was in my ankles and knees. It felt like somebody was stabbing them with a knife and they would swell up too. Especially in the mornings. I would get out of bed and it felt like my ankle was going to break when I walked on it. The gout eventually went away when I was completely tooken off the cyclosporin. I was like you, on a high dose of steroids for a while. I remember when i first started the steroids I had shooting pains up and down my legs, arms, and back. When they started to taper me off of steroids my legs hurt so bad i couldn't walk. I knew it was from the tapering because every time I lowered my dose it would start that day and slowly go away. I would lower my dose again and same thing,,, all the way until I was completely off of it. My bones are weaker now from the steroids and my hips feel like they are going to break sometimes. I also have circulatory problems in my hips due to the high levels of steroids. Yeah so my whole point of this is it might be the side effects of the drugs you are on,,, and your body might be fine.