Please I would appreciate any help I am Baffled by this disease.

[social me]

:confused2:Hi everyone, I have been diagnosed for 4 months. I was on weekly b12 then now to 1 a month. I also had 1 transfusion of iron and another 400 of venfor in a week and my monthly b12 I get this week. I eat very well small but often , I take liquid vitamins andI also had my remicade 4 weeks ago. The last 4 to 5 weeks I noticed less pain, vomiting, diahrea, everything just stoppped. I had more energy, was sleeping through the night. It was wonderful. Now as of last wednesday I am back to having pain, diahrea, cramping and I am EXHAUSTED and lethargic. I am so confused I felt like it was all starting to work, slow but sure so why, all of a sudden would it just get me feeling sick again. I was almost starting to hope that maybe I was going in remission. The doc wont put me on remicade evry 6 weeks and b12 only 1 time a month and after this next iron infusion he wants me back on iron pills which didnt help before ( hence the infusion) so why start me on them again? This is what really sucks though, due to all my blood tests, tests w iv, infusions iron and remicade my veins are weak and getting hard to find a vein. The nurses mentioned I should look into having a port but my doc refused because the remicade could make me susceptible to an infection. My veins suck and it takes 2 to 3 times before they can find a vein. So the doc is trying to put me on less infusions, but those work the best for me because when I was on pills after a month they took blood tests showed my body was not absorbing iron, d and b vitamins. I am so confused I dont know what to do? I need infusions but it hurts so darn bad and leaves me with bruises. Even my hand wont work anymore. Is this usual to feel good for a month then return to feeling sick and in bed again. I dont want to loose hope that maybe I could go into remission but after doing EVERYTHING docs have all ordered me to do how can I start taking a step backwards? I am worried summer is here and I want to have energy to be with my children. Is this normal to feel good for a short time then back to feeling like a sick person again. Any advice I just feel really confused? Thanks all.:ghug:

 

[Terriernut]

I've not taken Remicade yet, so I'm no help at all on that score. But have you looked at the Remicade subforum yet?

As for the veins, my mum used to put my arm in warm/hot water before she could give me injections when I was young. It worked a treat for finding my veins, who loved to hide the moment a needle was produced. (they still do, intelligent little buggers!) If she had to do it in my thigh, a hot towel was produced.

As for the vitamins, give you Dr the lowdown and insist on doing it the way it works for you. If he says no, why is it no??

I hope you get some more help and soon!
:hug:

 

[kd82286]

I have to say that I am not on Remicade either but I take Humera injections every two weeks. After my last hospital stay they started me on the injections and for the first few months I would be ok for the first week and then sick the next until my body built itself back up. Could it be that you need more frequent infusions?

 

[social me]

Thanks guys, I will most def. try the heat next time. Also I agree I need infusions more often so I am going to my derm doc who was the one that started me on remicade 2 years ago for psoriasis, she will be willing to increase it I hope because GI said all his patients are at 8 weeks, which is rec. My biggest question though is it normal to feel more energy and and then start feeling lethargic and tired. For weeks I was having energy in afternoons and night, never mornings. Now I am back to sleeping all day or being tired and winded again. Is it normal to go up and down every few weeks, cuz if not I need to tell my doc somthing isn't working. ARG So frustrating I had hopes that because I was patient did all tests I though "ok it took 3 months but at least I am having more energy" and it felt great now its gone and I dont know how to get it back? I have tried to stay very positive despite feeling low but now I am just confused. Thanks for your help I do need infusions more and I will requestthat they heat my arm from now on. You guys helped me much THANKYOU and God bless.

 

[Terriernut]

From what I've read from other 'remi's' (is that a word?) yes, that is what they feel like. However, you need to let Dr know exactly how you are feeling, in fact, I think you should keep a diary with you at all times. Record EVERYTHING. We conveniently forget when we're facing Dr's just what all we are going thru!
:ghug:

 

[kd82286]

I agree completely with Terriernut. A journal is the best way for you to accuratetly track your energy levels. That way when you see your GI you will have facts to present to him. My first GI didn't actively take an interest in my symptoms unless I could tell him exactly when I had certain problems. My new one is much better about listening to me but I understand where the first one was coming from. I know it can be frustrating to be alternatley tired and energetic but it does get easier. You learn to spread your activities out and plan for the times when you have the most energy. Good luck!!!!!