Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Boy I needed you guys

Hi Simone,
I found your previous thread so difficult to reply to I simply didn't :(
I'm bothered by the fact that I didn't, so I'm so very glad that so many other people were able to reply and, moreover, that theer wonderful support counted for so much to you personally.

My mum turned to me when I was about 16 asking for advice. She had recently (3 years) divorced my dad and was suffering with a (rather late) teenage style crush on a man and had nobody to talk to about it. I really appreciated the trust she put in me and that she valued my opinion so much. As you can tell by my writing this, I clearly remember it to this day, some 22 years later. Obviously much different situations, but you see my point, that your kids will feel very good about you including them.

I'm glad there's some hope in the shape of prednisone, because hope is what we really need when things get that bad.

  LZ

Dear Simone,

I wish you the very best of holidays and even though you may read this when you get back I am sure it will still apply. Hope you will gain lots of wonderful new memories with your family on holiday and think of us here in Canada...cold, bleak and yucky today.... and enjoy!! Seriously Spring is coming and for me Spring while being a beautiful time always brings with it more pain for some reason that I have never figured out. I think it is likely because if I was in good shape I would have the best garden and that just can't be now can it?...yeah that's it...it'll make someone else happy. Otherwise I am sure my garden would be the one that took the prize..yeah I will cling to that thought. Just foolin'.

Have a great time and may the Pred. work well for you!

"Music Is Healing" And "SOOTHES THE SOUL"

I am glad to hear that at least when things are awful you know the Prednisone will work as a last resource.

Like you I tend to follow my gut often in decision making after getting all the input I can. Evrey now and then when I think its my gut talking it can be my anxieties about a certain change in how I'm treating myself.

Good luck with the prednisone.

 
stevec-they also serve who stand and wait

Simone, I'm so glad you were able to get someone to listen in time to salvage your vacation. After what you've been through lately, you deserve a rest away from real life for a while.

I'm only just learning in the past couple of years to listen to my intuition/gut on a fairly consistent basis. My AS is nowhere near as bad as yours from what I can tell, but I do have times when I would give just about anything for some drugs, even tho my gut is telling me so very strongly not to go there. Sometimes, it's hard to tell whether it's your gut or your fear talking, know what I mean?

Anyway, I hope you have a marvellous vacation. Looking forward to hearing about it.

Hugs,

Kat

Hi LIz

I am very late in replying to you so sorry. I got back from my trip on the 27th. The prednisone kicked in nicley at 60mg and I was virtually pain free for most of the trip. It was fantastic. We had a great time, beautiful weather lots of fun and I LOVE the ocean!!! I was so happy I had gone on the prednisone. I was dosing down while I was away and the pain returned at around 30-40mg but still doable. When I got down to 10-20mg the pain came back with avengance, worse than before. I was having a hard time breathing as I could only take shallow breaths and if I did take the odd deep breath my chest would actually crack. On top of that, the pain is so bad in my lower and upper back that it limits the use of my arms. The pain has been off the charts and probably the worst it has ever been. I e-mailed my rheumy again. She was out of town but called in more predn. I started at 60 mg and couldn't wait for some relief. It never kicked in this time for some reason. I see her Wed. so we will have alot to hash out but I am to take another 30mg tonight for a total of 90mg. I desperately need sleep and relaxation. It has been hard on my family to see me in this kind of pain as I usually hide the pain so well but this pain is too bad to hide. Thanks for all your support and I will let you know how things go on Wed. My thoughts and prayers are with you also that the remicade sticks. Not everyone on it long term developed antibodies so there is hope.

Love Simone

Thanks for the different perspective LOz, that was helpful.

Simone

Thanks Els. I had a great trip thanks to the pred. Not doing so well again though. You can read some of my other replies for the details. Spring had sprung by the time we got back. Hope it has for you. It has been a long cold winter!!!

Hugs

Simone

Thanks Steve

Sorry for the late reply. I had a great trip thanks to the prednisone but when I came back down things got ugly. Despite going back up on it, it hasn't kicked in yet. I see my rheumy on Wed and hope she has some tricks left in her bag for me. I know I have been a real challenge for her to treat, but she had never given up on me and she has never denied the intense pain I have been in. I am so thankful for her. It took at least 10-15 doctors to find her.

Hope the girls are well, oh you too. We always forget about the dads.

Thanks Kat

We had a blast thanks to the prednisone. Everything about it was GREAT!!!!! I never want to come home. When I am feeling up to it I will post some of my pics. Things are bad again when I came down on the pred. I am back up on it for one week until I see my rheumy on Wed. This time though the pred hasn't kicked in. I am trying 90mg today. If that doesn't work something very strange is going on. This is probably one of my darkest most painful times with AS and I have had it since I was 12. Sometimes I just say "ENOUGH ALREADY" and feel terribly sorry for myself and then I visit kickas and see people much worse off and then get out of "poor me"place, and fight again. I will keep you posted on my rheumy visit. Thanks for the support.

Hugs

Simone

Hi lovely Simone,
You are such a darling. I think of you so often and I hope and pray for you to feel better. I hope to God I don't develop those antibodies, but it is all so dicey isn't it. i am soooooo happy to hear the pred worked for your holidays and I hope it will kick in again. I wanted to mention a couple of things. Some of the terrible terrible pain you might be experiencing might be those same anti-bodies. When Remicade stopped working for my girl-friend, she said that she experienced triple her usual pain for quite a long time until the Rem. was totally out of her system. She then went on Enbril and it worked really well for her, where as the Rem. only worked for a month or so. We also notice that when people go into continuous high flares, it is harder and harder to bring them down..so we try to bring down flares as fast as possible. I wonder if some of this is happening with you. Would you consider trying Enbril? Anyway, thanks for all your kind thoughts. Oh yes..just wondering..did you notice weight gain on the Rem.? My girl-friend and I both put on a ton of weight. I thought it was the pred...which I'm sure it was in part, but now I'm realizing that the Rem. is a real contributer to this as well. It's all pretty awful but I am working on it. I hope you get some answers from your Rheumy.
Liz