[ppataram]

#1060550

Hi,

I was on prednisone (oral and high dose IV) for the majority of the last 2 years. Graves eye and thyroid are now stable, but I suffer from insomnia. All the doctors say that its unrelated to the prednisone, but I wondered if anyone else suffers from this and what are some possible solutions. I did not have this problem prior to being on steroids.

I’m seeing a sleep neurologist and have tried lunesta, ambien, silenor, trazodone, none of which give me more than 1- 4 hours of sleep and I feel terrible the next day. Looking for suggestions on things to ask my doctors about and if I’m the only one on this.

thanks

[Kimberly]

#1183253

Hello and welcome!

That’s not a side effect that I’ve heard of for prednisone, but I know we have many posters here who have taken it for TED, so hopefully, they will chime in with their experiences.

One other thought – is your doc testing Free T4 and T3 in addition to TSH? I know that patients do report having symptoms when T3/T4 are out of whack, even if TSH is normal.

Hope that you can get some answers – and a decent night’s sleep!!

[connypie]

#1183254

i was on steroids for chemo and it affected me greatly.they had to reduce my dose by more then half.thank god i didnt have to take it for a long time.maybe it will take time to wear off?i had severe insomnia while my graves was untreated and since then iam jealously guarding my sleep.i sleep with earplugs wich helps alot,and sometimes i take lorezapam for my anxiety,wich makes my head go round and round at night.hope this helps. connypie

[ppataram]

#1183255

thanks guys for the thoughts and your experience. the docs did check and my Free T3, Free T4 and TSH are all now stable. (knock on wood).

Finally off prednisone and now just fighting the insomnia. Adrenal gland function test also came back good, albeit on the low end.

The other concerning item I’m going through is hairloss. It seems like more is falling out more recently. I wonder if anyone else is going through this as well.

[Kimberly]

#1183256

@ppataram – Hopefully, others will chime in here, but you should start to see some relief from the hair loss now that your levels are stable.

[Robboford]

#1183257

Hi ppataram,
Although I am currently going through TED, my Opthalmologist is totally opposed to prescribing steroids so I can’t offer any of my experiences with it. He has had 5 patients that have all had suppressed Immunes resulting from taking the Steroids, so he is unwilling for me to take them. Hopefully now that you have stabilised; some, if not all of your symptoms will settle. Best wishes, stay strong and keep fighting.
Cheers
Deb
(A.K.A. Robboford)

[hollygsmith]

#1183258

Hi ppataram,

I was on oral prednisone for around a year the first time and about 6 months the second time, both for TED. I also had 3 infusions of the IV steroids in that first year, but couldn’t tolerate the side effects. Both times while tapering off the steroids and then for about a month or two after I had pretty extreme hair loss. I probably lost about half my hair the first time and had to cut it short. It took a while for it to recover and start growing back and when it did, it had a bit of a different texture. This was really hard for me because I had always had long full hair. The second time around wasn’t quite as bad because I used a product my hair stylist recommended (Bosley shampoo, conditioner, and leave in treatment).

The insomnia was horrible while I was on prednisone. I would have to take Benadryl every night in order to sleep. It took a while after completely tapering off the prednisone for my sleep to return to normal. My understanding is that it takes a while for prednisone to completely get out of your system. I also experienced some strange muscle aches and tenderness especially in my ankles for the first few months off prednisone as well. It’s a very powerful drug. Sorry you had take it for so long. Glad you are stable now.

-Holly

[snelsen]

#1183259

Well, when I was on prednisone, I was WIRED! And that is when my motor was really running! kinda like hyper, but not really!

I have sleep issues, too. Also went to sleep clinic, stayed all night, with many wires on my head. Did not sleep well there, either. Hard for them to evaluate my sleeping, cause I did not do much sleeping! No apnea, and no need for CPAP, either.

I’ll mention the usual stuff, and say in advance, that when I DO get at least 30 minutes, if not more, of brisk walking outside, I do sleep better. And the other usual stuff. Try not to eat right before you go to bed, stay away from caffeine after breakfast…but I am sure you KNOW all this!

Sleep deprivation is terrible! I tried a few of the meds you tried, but they did not help that much, and I felt like a zombie in the morning.

I suspect your hair loss will become a non-issue soon. IT did for me.

Other than you going to a sleep lab, to be sure you don’t have sleep apnea, I have no suggestions for either of us! Just commiseration and understanding! Maybe we both will hear the magic answer!

I am also older, and I understand sleep is more elusive with age. Dunno!
Shirley

[Author]

Posts