Barely holding on !

[Gram214]

Hi..I'm new to this forum. I was diagnosed in 1999 with Crohns disease. I'm 63 years old..never had any surgeries "Yet " . Came close last year while flaring badly and was hospitalized for a month. I started Remicade January 2013 to present every 8 weeks . I had previously tried it in 2005 for 2 years and it failed. My GI Dr. wanted to try it again. I do "pretty well" gut wise until the 5 week mark. Then all bets are off...also my joints, muscles, tendons, all hurt so bad I can hardly function anymore . I have to pay 20 percent out of pocket co-pay ..with a Medicare Advantage plan...so closer treatments are just not an option. Healthwell Foundation helps but their grant only pays 3 treatments then I'm out of money already . I'm so between a rock and a hard place. Anyone else have so much body pain ? What do you take for it ?

Current meds.

Remicade

Azathioprine

Prilosec

Celebrex

 

[KyleB]

Sorry I don't have advice for the pain, but hang in there!
I'm sure someone here can offer some help.

 

[Essieluv]

Gabapentin can be very helpful for body and joint pain. Another option may be Amitriptyline, and the bonus with this med is it can also help with gut pain and diarrhea. I strongly suggest you go to a Rheumatologist, as you may be having some enteropathic joint problems caused by the Crohn's.

 

[nogutsnoglory]

I saw you wrote you also suffer from fibromyalgia. Im on lyrica now but haven't noticed a difference yet. Maybe that will help you? It's basically a newer version of gabapentin.

Have you seen if maybe you are eligible for financial assistance for more frequent remicade infusions?

 

[Gram214]

I tried Lyrica but had no response to it . The Dr. thought it would at least help my painful feet. No luck ! I keep trying different shoes but the truth is I need new feet .
It is extremely hard to get any financial assistance unless you're low income . Our Medicare Advantage insurance is great but only pays 80% of my Remi. The premiums alone kill us too . Both my husband and I need good coverage. All the help programs for the big gun drugs out there won't help if you are on Medicare ( something about Govt. programs) except for the Healthwell Foundation. I am very grateful for the help they do give me but still have to pay for a few treatments until the end of the year. Every year I hold my breath that they will give me a grant again for the next year.
Most every day I feel like 63 going on 90.

 

[Essieluv]

Fibromyalgia is a tough nut...not fun. This may be something you have already tried/considered, but have you looked into Remistart?

 

[Gram214]

Yes...was all approved and I was thrilled. Then they turned around and said I wasn't approved because I'm on medicare. They would've given me much more money too !! Just because you're on medicare you're wealthy ? I think NOT !! I've spent hours searching for help. Thanks a lot for your interest though ...I appreciate it. We'll just have to dip into our life savings to pay for this drug that may kill me in the long run anyhow..oh my.

 

[nogutsnoglory]

Have you looked into some of the foundations that give grants? You may also want to call the the Jennifer Jaff Center, they help people with chronic disability and may know some resources.

 

[Essieluv]

Wow that's rotten! Don't even get me started on how ridiculous healthcare costs are here... I know that some people get a secondary private insurance to help cover med costs, but I don't know details or what the prices are. It depends on what state you live in, I believe it's not availible in some states.

 

[Ckk4]

I have horrible joint pain! On Humira right now and it's not working. Although I've only been on it 6 weeks. Tomorrow I'm calling my dr to try and get on something else. The only time I have ever felt good was while on prednisone. And I will never take that again! So when I figure it out I'll let you know! Lol

 

[Gram214]

Oh Ckk4 do I feel your pain. I too have been on and off the evil prednisone countless times in the past...trying very hard to not resort to it now. Sometimes at my weakest I wonder if it's really the worst evil of the CD drugs ?? Yes it makes me look like a Jack-o-lantern...makes me crazy(er) ...hungry.. but it does seem to make my body less painful.
I was seriously thinking of going from Remi to Humira but maybe I'll just scrap that thought.

 

[Nancye50]

I don't see why Humira wouldn't be worth a try just to see if you respond to it better?

 

[Gram214]

Thanks for your response ..Tuesday is my Remi infusion. I'm hoping it'll take away some of my discomfort...no wait ...PAIN. I think I am going to call the Humira # and see what kind of financial help they have available. Remi comes under medical..my ins. pays 80% Humira would come under prescription. I would reach my "Donut Hole" in one package I think. Then what ?? Sigh

 

[Ckk4]

Some say it can take up to 4 mo for humira to work! So I'm still hoping for it to work soon! I've heard that it has helped a bunch of people.

 

[Essieluv]

I wouldn't rule Humira out just yet. It can be very helpful in people who didn't respond well to Remi.

 

[Gram214]

Anyone yet trying the new Vedolizumab infusions ? Supposedly only takes 30 minutes !
I'm up for trying it since I can't get any more financial help for my Remicade for the rest of the year. I had a grant from Healthwell Foundation but it's exhausted already . I haven't called this new drug co. yet to see what kind of help they offer. I'm thinking maybe since they're new they might be anxious to give help ? Let's face it Remi makes tons and tons of money they don't need my buisness hence why should they help little old me .
Since starting back on prednisone I am feeling less pain but more hunger ..like I need that ! I'm afraid my body likes this demon drug too much. Seems after I'm completely free of it for any length of time I slide backwards again. Sigh

 

[Nancye50]

I hadn't even heard there was a quick infusion option. And a different drug? Does that make it an option for people with antibodies to the others?

 

[Gram214]

Not quiet sure about this new infusion drug as far as antibodies ? It's also a biologic but supposedly targets the gut . Have a look into it..maybe we all could benefit from it ? I sort of quit worrying about the side effects of things. I am just to the point where I want to feel good..maybe I'm wrong but today is my top priorty not tomorrow which may never come.

 

[Nancye50]

Good point @gram214. I have enough joint pain that I wonder if it would benefit me. Hopefully I'll keep doing well on Humira.

 

[Emily's mom]

Hi..I'm new to this forum. I was diagnosed in 1999 with Crohns disease. I'm 63 years old..never had any surgeries "Yet " . Came close last year while flaring badly and was hospitalized for a month. I started Remicade January 2013 to present every 8 weeks . I had previously tried it in 2005 for 2 years and it failed. My GI Dr. wanted to try it again. I do "pretty well" gut wise until the 5 week mark. Then all bets are off...also my joints, muscles, tendons, all hurt so bad I can hardly function anymore . I have to pay 20 percent out of pocket co-pay ..with a Medicare Advantage plan...so closer treatments are just not an option. Healthwell Foundation helps but their grant only pays 3 treatments then I'm out of money already . I'm so between a rock and a hard place. Anyone else have so much body pain ? What do you take for it ?

Current meds.

Remicade

Azathioprine

Prilosec

Celebrex

Sorry you have to go through this pain. I'm not sure, but isn't there a program called RemiStart that helps offset costs? I hope that might help.

 

[Gram214]

Remistart won't help if you have any Medicare plan. If you have any type of Govt. insurance it makes it impossible to get any of the coupons ..etc. either. Makes no sense does it ? Healthwell does but grants don't cover enough ...but I'm very grateful for what they give me.
I'm tapering down from a course of 20 Mg pred. and am now at 5. Everything is gradually getting worse again now. Last week I got a steroid injection in my hip..didn't help. My feet hurt so bad I have to hobble along...it's so frustrating. My tummy is what it is . After eating.."gangway to the bathroom" routine. Oh well....no bleeds at least.
Best wishes to all .