update on clinical trial

[loulou]

hi

Clinical trial for pbc treatment.

I started taking the clinical trial on 11th may things looked as if i should be ok, but things took a real change on Wednesday, i had been experiencing itching on and off for some weeks but nothing to bothersome, but wednesday was just awful, i had increased itch during the day, but come nightime i was in severe unrelentless itching all over, to a point of madness, i was awake all through the night trying to get some relief.

I phoned my clinical nurse who put me through to the liver specialist involved with the trial, he said to stop the drug immediately, but i had already taken it in the morning. I had been given a medication of sachets named Questran - which you make up with fluids, the intention is to bind the bile in the gut.

Last night still no relief, infact it seemed  worse, the soles of my feet felt constant burning, still feeling quite rough today, nausea and shaky, headache but i think it may be due to no sleep, still scratching everywhere. I phoned in sick only to be told was i taking it as annual leave (can you believe that) i said no im sick. !!

Got apt on wednesday coming to review the situation, until then i am to stay of drug, they may want to re-introduce at a slower rate if i can get the itch under control.

I feel disappointed right now, and quite unwell, i feel unsupported by work and other half doesnt seem to grasp how unwell i feel right now.I am quite low in myself, i haven't felt like that since i was first diagnosed with sjogrens. I hope its just a phase and that i will improve as soon as i get the itch and sleep back to normal. So glad i can vent here, wouldn't know what to do otherwise. Thanks.

Sorry its long reading.

TAke care all.

Loulou

[Scottietottie]

Hello Loulou 

That itch sounds horrendous. I'm sorry you're feeling so poorly. I know that itching can be a symptom of liver problems. The burning feet could be SjS related though. Peripheral neuropathy. Once again - you have more than one thing going on and some symptoms overlap. I hope the itching subsides when the drug totally leaves your system.

Your work sounds as though they are being very unfair to you. If you're sick - you're sick. How dare they doubt you!

I don't think its at all surprising that you feel as though you're back to square one. It's another diagnoses and coming to terms with it takes time. It's also disappointing when a trial you are pinning hopes on, isn't helping.

Take care - Scottie 

[kindandcaring]

LouLou

It might be worthwhile getting your Doc to write a letter to give to your work the seriousness of the situation..the trial... the fact that it is and may make you sick...get your Doc to say you may need time off depending how sick you feel...then your work would have to comply.

It might be good your Partner reading it as well.

I feel for you..it's bad enough having these freakin diseases without the added undeserved pressure and negative energy from all those around.

Having PBC and Sjogrens symptoms you deserve everyone that is around you's respect..! period.

Other halfs dont always get it...because its not happenning to them..and it is hard when your healthy to understand...but other half's do not really have any choice in the end..so I hope yours comes around and does understand how serious things can be and to help you through.

All my best

[loulou]

Thank you scottie and kindandcaring - for your replies.

Scottie - that is just how i feel right now, being back to square one, i had another bad night, another day off work. my stomach issues have become bad again, i was taking slippery elm powder to coat the digestive tract - cause i had to stop it whilst taking questran the symptoms have returned. i have stopped the questran for now to try and get stomach back to being comfortable.

I was pinning on the trail drug to help the liver, but i wonder now if i will have trouble with the standard drug given for pbc. Thank you again.

Kindandcaring - i read your post and agree that i should phone up my gp - i tried my gp, i need to call later when he is in. Because i have been under the hospital for most apt and treatment i haven't been to see him as often but he does know the situation. I will ask for a letter, but the reception says i can self certify for 6 days, but if the gp writes then like you say my works may take it more seriously. There are times i feel so lonely with all of this.Thank you.

TAke care - and have a good weekend.

Loulou

[Chickpea]

Hi Loulou

I'm so sorry to hear that you're having such a hard time.  Bad nights just seem to wreck the following day, don't they?  I hope you manage to get some rest over the weekend.

Any time you feel lonely come and hang out with us.  We can empathise with how you're feeling and hopefully help you feel just a little bit better. 

Thinking of you - Chickpea

[loulou]

Hi chickpea

THank you, i did actually sleep better last night, i have notice that i am not itching so bad today either, although i have bruised my legs with all the itching.

It does seem that getting sleep does make it easier to get through the day. I am feeling more myself today. I apprieciate all the support and thoughts from you guys.

Thanks again

TAke care and hope you have a good weekend.

Loulou

[kindandcaring]

Good to hear you had a better night.

Here is to you get more better days and nights.

All my best

Take care LouLou

[lynnmarie219]

Hi loulou,

I'm so sorry that you went through all of this but glad to hear that you are beginning to feel better and more like your self!

Has the work issue settled down some? I actually have FMLA paperwork done for myself and this covers me for my appts, tests, and on days that I'm not feeling well  due to my sjogrens/fibro. As long as I don't take more than 12 weeks within 12 consecutive months the law protects me. Now if I go over that, the law sides with the employer. The time off does NOT have to be consecutive...it can be a day here and there!


Let us know how you are doing when you feel up to it!