Nearly ready to breakdown. | Arthritis Information

Six and a half months and two rheumatologists later and I'm still in just the same place. I had one give me 100mg of pred a day along with two other immune suppressing drugs which is responsible for three sinus infections, shingles, cellulitis, and now apparently I have glaucoma and high blood pressure. The dose of pred has been reduced to 50mg now and I've been put back on MTX at a dose of 17.5mg weekly and Enbrel 50mg weekly. I've been on both for a month now and don't notice anything. In fact, I think I'm starting to get worse rather than better. I don't believe any of these drugs are going to work at all for me. I've taken Kineret, Enbrel (this is the second go round), remicade, and humira.

It just seems so hopeless and everyday that goes by that I have to sit here and stare out the window just makes me sink further into hopelessness. Most days I think it would be best if I were dead that way my family could have their lives back. It's like I have nowhere to go for help and anytime I ask for it I get blown off by the docs. I'd leave and go somewhere else but honestly all doctors are the same..in it for the big wad of cash and to hell with the patient that is living in hell every day of their life.

Bob

I wish I had some magic words (or a magic wand) to make it all better. Sometimes it's when it's the darkest that we find the courage to overcome the impossible situations. Have you talked to a counselor or do you have a faith community you can reach out to? I can at least offer up prayers that you'll find relief this time around with enbrel.

Cathy

Bob, I am so sorry for your troubles. I can't imagine what a hard situtation that must be. I just wanted to say that since you've tried almost everything and nothing has worked, even if you don't believe in it, why not give antibiotic protocol therapy a shot? It's cheap and it can't hurt you. I have read many stories like yours of people who were ultimately helped through AP, when nothing else worked.

You could read The New Arthritis Breakthrough, which is probably available at your local library, and a good internet resource is the Rpad Back Foundation at http://www.roadback.org/. There are also people on this forum at various points of the "road back" who can give advice on the protocol.

Whatever you decide to do, I hope you find some relief. No one should have to live with this awful disease.Bob I am so sorry that this darn disease has got you so bad, I can relate to you as i too have felt really low with it at some stage. When nothing is making you feel better and the doctors dont understand...but please dont give up, dont let it beat you. You will find a way of coping i promise and we have to live in hope that there will be a drug that will work for us. Im sure your family dont see you as being a burden, imagine if you died, it would be so devastating for all those you leave behind and not fair on them either. As Cathy said a counsellor is a good idea or a support group for RA( one where you meet people face to face) as then you can chat to people who understand what you are going through.

Please Bob if you want to vent it all and have a chat get on here or PM me ( or any other member) and im sure we all will be able to offer a shoulder.

take care x

When I was in the hospital I was on like 5 or 6 different antibiotics including vancomyocin and invanz. The only thing this helped was the cellulitis. And the constipation from the pain meds. Plus, my doc is not an avid supporter of antibiotic use either. Fear of creating resistance I think.

Bob,
I was in a similar place in 2006. I couldn't get out of bed, had to be lifted on and off the toilet, chair, couch. I spent alot of time crying in the dark. I have never been so miserable or depressed, but I knew my family would never forgive themselves if I did, what you're thinking. I don't know if you should look for another dr., but maybe someone on here who is from your area has a dr. who they feel has their best interest at heart. It's important to trust your medical team, especially if there isn't a light at the end of the tunnel yet.Bob - I know what you are going through, it took me four years. 0,000. But I know one reason I survived is I ate right, didn't smoke, didn't drink pop or alcohol, minimal sugar and salt intake, chiropractic and massage, gallons upon gallons of filtered water, vitamins, and most importantly, practiced serious colon health. And I mean serious as constipation is one of our symptoms.

If the doctors wouldn't help me, I had to help myself, until the morons finally pulled the right test to pin down what I had instead of throwing up their hands in despair. And the bad care didn't stop after diagnosis, so don't get hungup on thinking that when you get diagnosed, it means better care. I thought my ex-rheumatologist knew what he was doing because he diagnosed me. Turns out he was a very bad rheumatologist, but knew how to order up the right blood work one time in 18 months. I am grateful for that one time.

I just got a letter from him yesterday, and he is leaving his practice here and moving back to New Hampshire or something. "Personal reasons beyond his control", right. Probably lack of patients as we all left him one by one as he only knew a couple of tricks.

Break it down to one day at a time, and today, just concentrate on doing one thing that's healthy for you. I can give you the specific particulars of a health regime I think works (for me at least), and if you want to, pm me if you are interested.

We are all pulling for you. Take care ~~ Cathy

justsaynoemore2008-10-31 17:48:18

Bob-I hear you. I have felt like you are feeling. I too had a lousy doctor. I was not responding to medication. Every day seemed worse. I tried so hard to so all the right things to get better but I didn't get better. I felt like my family was tired of caring for me. I was in a very bad place.

I prayed a lot and kept my faith. I don't like to push spirituality on anyone so I'm just going to throw this out to you and you can ignore it or respond. I won't be offended if you choose not to respond. My mom sent me a special prayer to say every day. The words were so moving and comforting and it asks for healing. If you would like me to give you a copy please PM me.

I got better and I really think prayer helped.

I'll put you in mine. Hope you feel even a little bit better real soon!

Thanks...really to everyone

I don't know what to say. I was just getting some things off my chest and it's nice to know that there are others that have been where I am now. At one time in my life I was all about faith and belief that God had a plan for everyone. Then in 2007 when my mom passed away suddenly, I began to question my faith a bit. It just seems like since then, nothing but bad things have happened to me.

First the flare from hell, then getting dumped by my old doc for seeking help from another while she was out of town for a month. Then all the crap with my rx insurance, then the damage done to me by the massive dose of pred from the new doc. I know she did what she thought she had to do but man the consequences I'm paying now are worse than waiting it out for any dmard to work.

I haven't completely lost faith, it's just buried deep down under all the bitter feelings. But the light is still flickering wanting to burn again. So if anyone wants to help a fellow gimp out spiritually I very much welcome it.

and thanks guys really...I mean it and appreciate it more than words can say.

Bob H.

If it's there, even a light glimmer, it will surface again when you're ready. Whether it's organized religion, spiritual awareness or just the belief that there has to be something to hold onto, just keep the light burning.

Take care

Bob, I do not know your history but have you tried all the biologics??????? Why 100 mg pred? I have been flaring and pretty much completely crippled for over a year and I finally went on 55 mg. pred. I was amazed how all of my swelling went away. I got to see my feet and hands for the first time. Now I am tapering down and got on Enbrel and I continue to stay improved. I felt pretty crazy on 55 mg, 100 must be effecting you emotionally and lack of faith and optimism. You sound in really bad shape. When were you dx with RA? I can relate to feeling very hopeless, you sound worse off than I was - but my faith has comeback and I am hopeful. Things can turn around. Wishing you better times.roxy2008-11-01 01:42:28HI Bob, I agree with Roxy, the rollercoaster ride is what our disease is like, currently I am on the downhill slide but after 8 years, I know the ups have to follow, so be strong, know that we are here for you and we have all mostly been where you are at now. I will keep you in my prayers, all the best from Janie. We all go through some pretty dark times. For me it was the first year. It took a long time for MTX to work for me and I felt miserable and useless...and scared. But, I am so much better today, 6 years later so it can and usually does get better for most people with RA. Hang in there and don't lose hope.

Alan

Bob, I am sorry you are feeling so low and frustrated. I hope you have brighter days ahead. Saying a prayer for you now.Just sending support your way. We have all felt at least some of the things you are and you should lean on us whenever you need. You will get through this and find a way to reconcile the life changes. I am so sorry you are in such despair. Please hang in there.

I reduced the pred to 5mg daily but still couldn't get completely off of it. I was on 5mg, but the Enbrel had since faded out so I went to Remicade which was only given to me at the minimum dosage of 325mg. Obviously it did no good because within a year the mother of all flares hit me. That was the end of May this year. For some reason, the usual pred. dose of 40mg did nothing this time though. We tried 60....nothing. So the doc based the dose on body weight and gave me 1mg per kG of weight which was close to 100mg. That helped some. It's been suggested that the inflammation caused from my RA has seen the pred so long it is now building an immunity to it.

So that's why the large dose. I've been through all the anti-TNF drugs, my only remaining options are Orencia and Rituxan. Unless a larger dose of Remicade would work but I'll leave that to the doc.

I agree with you all. It has to get better at some point. Certainly my RA can't be so aggressive that nothing will work on it. There is still Arava too that I haven't tried.

Bob H.

Hi Bob, I'm sorry you're having such a bad time. There are so many ups and downs with this disease, often times more downs. Sometimes it's only a thread of hope that keeps us going. Hold on to that thread, for it WILL get better, it's just a matter of time. Your family loves and needs you even though you may feel that they are better off without you. It simply is not true. Hang in there Bob. You are in my prayers.Hey Bob, Sorry you are hurting so bad. I too am my Rheummys worst nightmare, I am getting ready to start Remicade. Maybe increasing your dose will help, I have heard several people say good things about Remicade and that they have required a higher dose or more frequent for relief. Hope your next appt is soon, it is tough waiting for the next appt hoping that this will be the one that will turn things around and make it all go away. I will keep you in my prayers and keep posting when you feel bad, everyone on here has been real nice and supportive to me when I have needed an extra boost. Take care.

Linda