I.V. steroid injections? Anyone?

[behcetshurtsbeyondwords]

Hello everyone,

I am in desperate need of finding a new treatment plan that may give me a chance at having decreased swelling and pain. I'm not even counting on full remission anymore, as I just don't see it happening for me because it's been 4 years that I've been so sick that I've had to give up so many things and am bed-ridden most days. I've been on maximum doses of Remicade 800mcg every 6wks for over a year now, and yet I still end up in the ER often to help manage my symptoms. I'm on very high doses of pain meds around-the-clock pretty much, but I'm still suffering in so much pain all the time. I've tried Azathioprine, Methotrexate, steroids (oral, IM injections, and I.V infusions) and am still on Colchicine; but nothing seems to help. I couldn't tolerate any of the immunosuppressants I was on because they just made me more sick and miserable.

I finally have another appt. set with my rheumatologist on June 6 (I was trying to get into see him since February, but he was taking so many holidays and was booked-up), and my Mom plans to come with me to demand him to come up with a new plan because the one he has is long overdo for retirement. He kept telling me Remicade is the best option for Behcet's and to just be patient.. but I think an entire year at the max. dose with no response is being patient enough. I've had it with this stupid disease.. I'm 25 and feel like I'm going on 95 because of all the crap I've been put through over the years because of Behcet's and I'm just so exhausted from it all. I just want to feel less pain and enough energy to get myself out of bed in the morning-- not asking for a miracle cure, just want to be a bit more comfortable!

I'm just wondering if anyone has had experience with receiving steroid injections through the I.V regularly as a treatment?

I'm looking into this option because everytime I go to the ER and get high-doses of steroid injections in my I.V, it immediately helps me feel a lot better than when I arrived at the hospital. It doesn't last long though, but that's probably because they don't give me a long-acting one and in a small dose.

If so, which steroid do you/have you received, what is/was the dose, and how often?

Also, is or was it helpful in treating your symptoms? or even just helping to decrease swelling and pain?

Thank you so much to whoever responds!

-Jenna

[infliximab74]

Hi hunni i know how you feel. I have had many treatments. Before i was given infliximab which worked for me for 2 years great i was hospitalised for 18 months on iv steroids. It is not a good treatment plsn to stay on as it has bad side effects. I was 7 stone 7 and went up to 17 stone. I eventually was given infliximab but had it 4 weekly as it didnt last between infusions but worked wonders for me until i became immune to it. I was put on humira weekly with azathioprine this stopped working so they changed me to leflunomide and humira but i am on 60mgs of steroids and still in flare. I am now going to see a behcets spevialist in liverpool at the behcets centre of excellence in may (21st) I am hoping for a new treatment so i can be a mummy yo my two girls who are 1 and 2. My mum has hD to take them.daily with being so ill. I dont know what i would do without her. I have had behcets since 9 and am 39 now. Its a horrible disease and hate it to but i try to tbink thete are always people worse off than ourselves!! Why not try to get your dr to refer you to one of the centre of excellences in behcets. There is on in liverpool london and birmingham. Its worth the travelli g if we can get specislist help. I have to travel to see many drs and i am glad they are willing to help me. IV steroids are not good long term hunni. I hope you can get sorted its a miserable life in bed i know. X Big hugs Christine

[behcetshurtsbeyondwords]

Hi Christine.. thank you so much for replying and I really appreciate you sharing your own experience with the i.v. steroids and other meds. I am sorry to hear of your own struggles with this disease I can't imagine having children, especially as young as yours are, and having to deal with being so sick all the time. You are very blessed to have your mom's help, but it must be so tough because I can totally understand that you want to be able to look after them yourself. This disease takes so much away from us; we have absolutely no choice in the matter and we basically become prisoned by our own bodies. It really upsets me when I think about exactly what is happening inside my body; knowing that it's my own body attacking itself and trying to wreak as much havoc as possible. I am also so incredibly grateful to my mom and also my dad, who have been there every step of the way with and for me, and still are caring for me even though I'm 25 yrs old. I often feel very down because it seems as though I haven't even had a chance to begin my life yet, and at the same time, I feel completely worn out by all that I've had to endure-- but then I hear your story of how you've actually been sick since you were only 9 yrs old, and yet you continued on to get married and have children-- it definitely gives me some hope.

But you are right about saying how there is always someone out there who is worse off-- even some people on here talk about how they have no support, live alone, and are in threat of losing their home because of this illness. We all become victims of Behcet's in our own ways, but it's so nice to have a place like this to come to so we can all be together to share our own experiences including our similarities and differences; it has been so comforting for me, because prior to finding this site, I had never talked to another person who knew what I was going through and I had no where to turn to.

I really do wish I could go to one of these centres of excellence, but I actually live in Canada... and we don't have any places like that to go to. What's even worse, I have been told that I'm the only known person with Behcet's in my entire province. Only rheumatologists can diagnose and treat autoimmune diseases here, but there are so few of them, and the ones we do have don't no anything about Behcet's. I lucked out that my rheumatologist had seen a case of it during his residency at Mayo Clinic in the United States, otherwise he would've never thought of it. He doesn't really understand the disease and only knows of treatments that are listed in his rheumatology text book. The problem is that he won't really admit that he can't do anything more to help me, and try to get me somewhere to get proper help. My parents have confronted him nicely about the possibility of seeing a "vasculitis specialist", but he got mad and said that he is the vasculitis specialist in all of Manitoba. Then we've discussed with him of pleading with Manitoba Health to have me sent elsewhere, either in Canada or the States, where they deal with Bechet's... but again he got really angered. My other specialist I see for another autoimmune disease I have has tried 3 times now to have me sent elsewhere, but because he isn't the one looking after my Behcet's, they've turned him down. It's so frustrating because I honestly don't have anywhere I can get help. It would cost thousands of dollars to just go somewhere myself because they would want to start from the beginning with all new tests etc. And my biggest fear is that someone will try to take my Behcet's diagnosis away. I can't even go to the hospital for help because they just end up under-treating my pain, refusing to give me steroid, and they call in all these random specialists who come in and ignorantly try telling me that my issues are all because of something else, like constipation or that I'm dependant or addicted to my pain meds. There is absolutely no understanding and I feel as though they just verbally and emotionally abuse me' I just come out worse off than when I went in.

Anyways, I apologize this got so long. I hope that something helps to settle things down for you so you can get back to your life and enjoy being a mom to your babies! All the best and Take care, Christine.

-Jenna

[Michja]

Dear Jenna,

I can hear your pain and hope you find the right specialist soon. It sounds like you have the wonderful support of your parents & they are fighting hard for you.

My daughter has had IV steroids a few times before Infliximab but since then hasn't needed it. I must admit I'm scared of what steroids are doing to her body, at every opportunity I ask the rhumatologist if we can begin lowering the dose. We try only to be increased by a flare again. We are having a go again now. Fingers crossed.

Jenna I do hope you find the right support and you get the opportunity to enjoy life a little more.

Love Michelle xx

[behcetshurtsbeyondwords in reply to Michja]

Thank you very much Michelle,

I understand your fears regarding the steroids-- over time they can bring on side effects which are hard to deal with once they begin. I already have started getting the "cushing-like" appearance from taking oral steroids on and off over the last couple of years; but I feel like I'm at the point where I will try anything.

I am so sorry to hear that your daughter has become struck by this horrible illness. She is so young and it's just not fair that a child has to feel the pain of Behcet's. It always hurts me so much inside when I hear of babies and children who are sick, because they are so innocent and don't deserve it.

I will keep you, your daughter, and the rest of your family in my prayers.

Best wishes,

-Jenna

[Sunset]

Hello friends;

My suggestion to you as someone who lives in Behçet's disease, I hope these problems will be over. Symptomatic treatment of Behcet's disease is not writing all the medical books. Members of the association of friends, seeing all my friends will enjoy the treatment of Behcet's. I just need some time.

[behcetshurtsbeyondwords in reply to Sunset]

Thank you very much Sunset, I would absolutely love for all the pain and suffering to be over; that would be the ultimate blessing for me and for my family. But in the meantime, I need to search for a better treatment that may at the very least, help decrease a bit of the pain and swelling. My greatest wish would actually be for the overwhelming exhaustion to be lifted from my body, because that is something that there is no meds for that can help make it better. I can take a painkiller to help with the pain, I can take antinauseants for the nausea, etc, but I can't take anything to help give me enough energy to get myself out of bed in the morning.

[Sunset in reply to behcetshurtsbeyondwords]

Hi Jenna;

Behcet's disease is a chronic disease of the body, the course has been the involvement of different regions. An end to the difficulties encountered during the treatment of this disease I want all of my friends. Behçet's Syndrome Association "Help us improve! Can you tell us why you have not joined? We know we can improve so feel free to be brutally honest!" Wants me to mixtures used in the treatment process with the announcement. Sharing of information with the competent authority the United States or United Kingdom would like to get in touch.

[billi]

Hi sorry for you pain and you being so young. I have suffered this horrible disease for almost 27 years now and I have been lucky enough to have had a few long term remissions of between 1 year and 7 years. Steroids for me a big NO NO. I was on them continuously for 7 years and each time the dose was reduced it the BD got worse and you have to start again on the steroids with a bigger dose each time. Eventually I was on 160mg daily when I decided enough. Not so much the weight ( who really cares about that if the pain has gone and you feel normal), for me it was the ups and downs. Great when it was working then I was on a high and I could do anything but as the dose reduced and symptoms crept back I would be on a real downer even suicidal so it was on the the Prozac as well. So I came to the decision that suffering BD was far better than putting my children and family through all the side effects and mood swings. Don't mean to upset or worry you but remember steroids are only a plaster they don't heal the disease only stop it from bleeding!!!

I know it must seem like a lifetime to you with all this pain etc but I would encourage you to find another route to go down. Maybe another doc might have better info or more ideas.

Please think carefully and we are all here for you whenever you need us or just to have a chat and maybe a few laughs.

Take care

Hugs and Smiles

Billi

[MrsBeau]

Hi there,

I haven't got this far with the drugs yet so I can only offer you sympathy

However, I have had debilitating mental and physical *fatigue* for the last year and am only now coming out of it so I understand your frustration. Drugs (for GI issues) didn't help, caused horrid side effects and made head swim more so I stopped them, stopped work and eventually restructured my diet (already gluten-free) out of desperation, to Vegan. I thought it was going to be pointless but I have seen significant improvement and I'm back on my feet.

Might be worth doing some form of elimination plan to see if you could get some level of relief?

Beau.

[NicosM]

pimurray.com/page6/Work.html

Clinical

Intraocular inflammation (uveitis) - diagnosis and treatment - medical and surgical. Patients are seen in two dedicated uveitis clinics/week, and a clinic every four months for patients suffering from Behçet's Disease with two Consultant Rheumatologists and Senior Lecturer in Oral Medicine. Also a clinic every six months looking at children with arthritis and uveitis with a Consultant Paediatric Ophthalmologist and Consultant Paediatric Rheumatologist. I specialise in cataract surgery in patients with uveitis.

Is my Doctor in Bham city UK... He is specialized in Behcet disease...

Nicos

[Sunset in reply to NicosM]

Hi Nicos;

You say you're a medical doctor. Pharmacological properties of the mixture will be hoping that by working Behcet's disease patients, patients with medically want to use. Hope this information will be used for all patients in treatment of patients with radical complaints will be treated strictly.

[NicosM in reply to Sunset]

No i am not a Doctor.. I am a patient with Behcet... I send a link of my Doctors information... "Is my Doctor in Bham city UK... He is specialized in Behcet disease... "

[mbuck-60]

my advise would be don,t be too eager to use i v steroids they,ve ruined my kidneys over the years and believe me the pain from that can be as bad as behcet,s it,s alright for extremely bad flares & your in hospital where they can monator you but they are horrid

[behcetshurtsbeyondwords]

Ok, I will probably be re-thinking the i.v. steroid route. Thanks everyone for sharing your experiences. Sometimes when things are so bad with this disease, we are willing to quickly jump into any drug regimen that may offer immediate relief, no matter how bad the drug's effects may be. I feel like that's what's happening right now, but I really don't want to cause more potential damage or other irreversible issues later on, just for a short amount of relief. Thanks again.