Infection and biologics? | Arthritis Information

 

Hi guys, as you know I have been waiting for my Rituximab approval, still don't have the script but RD assures me I have qualified.  I phoned RD secretary today to find out when I can have the infusion, (I have to go overnight to hosp due to previous intolerances to all biologics, RD just being extra super careful).  He said when I receive the script phone him immediately.

The problem now is , last week I was diagnosed with helicobactor- pylori, an infection in my gut.  The secreatary said I will probably not be allowed to go ahead with the infusion unless that is cleared up.  Next prob is I am allergic to penicillin so my GP gave me Keflex, and I am now allergic to that too!!!!!  So I have not had antibiotics. AAAAARRRRGGGGHHHHHHHHHH

So I am waiting for my GP to call me with any new ideas???????

We are hoping for infusion asap after Christmas.  I have been waiting so long for this.

I am in awful pain today, took my sons with hubby to Movieworld and Seaworld over 2 days, took my walker and tried to rest as much as poss, didn't do any rides, just watched, but it was worth it to see their little faces.  Now my left foot (outer bone about midfoot on the side) is so sore, GP said she could feel it doesn't feel normal and she thinks I have got another foot fracture!!!!!!!!!!  Oh well, just shoot me!

Liam is much improved on pred but unfortunately is getting very swollen from pred and is not happy about it!  He is due to come off in 5 weeks and start MTX for a year - any thoughts?  I still don't have a firm diagnosis only from my RD, Ankylosing spondylitis, which it certainly follows the pattern of.  Thanks for listening guys.

My joints playing up today -

Neck, shoulders, elbows, wrists, hands and fingers.  Spine, mid and lower, SI jts, hips, pelvis, groin, knees, feet, toes!!!!!! FATIGUE! Sounds frustrating!  I hope things settle down soon.

PhatsDoes not sound so good for you, hang in there. Yikes Janie hope you feel better soon! Liam too! I thought it was Clarithramyacin for helicobactor-pylori? Or did you not have a reaction to this also. Are you sure you are not allergic to something else? WOW  Tell me when you find something for this? I am worried about you.  Thanks guys, hi Milly, sorry it was Clarythromycin, the second lot of antibiotics chosen for the job, (I thought that was the same as Keflex?) Thankyou for your concern.  I feel like there is nothing for me as I cannot tolerate hardly anything!  Hugs Janie. [QUOTE=janiefx]

My joints playing up today -

Neck, shoulders, elbows, wrists, hands and fingers.  Spine, mid and lower, SI jts, hips, pelvis, groin, knees, feet, toes!!!!!! FATIGUE![/QUOTE] Keflex is different. I am taking Keflex at the moment. Cipro, Avelox and Keflex. Those are about my choices. Really makes my gut rumble. And other things we won't talk about. LOL Ask your doctor of course. I did a short treatment with Clydomiacin, check spelling as Milly is a very bad speller, too many meds,  for a tooth six months ago. But then i was allergic to the Clarithromyacin. They are in the same family. i am not saying it will work for you but maybe it is worth a try.

wow.. to be allergic to the meds that help... I'm so sorry janie!!!   I hope you find something quickly that works and you can have your infusion..

Okay, Janie, well at last I am catching up with this for you. Life has been absolutely full of end of year Neve events. I have had a great time but it's been crazy. Then over the weekend, I got sick and was in bed. I apologise for it taking so long.

Hmmm...well, for starters being on Pred, and I don't know how much you are on right now, is going to stop the healing process in your body.

Right from the word go, the Pred is battling the antibiotics for the infection. This makes you situation even more complicated.

I am allergic to penicillin also so I know how difficult that can make fighting off particular infections in addition to the Pred problem.

What else can your doctor try here maybe with antibiotics? Hmmm...maybe erythromycin, Doryx, Keflex (I am confused here, are you allergic?), Ceclor maybe. I have no clue what else Janie.

So my other thoughts are this...

Maybe to hit the infection solidly, have they thought of putting you into hospital for a short period and giving you some IV antibiotics? Maybe it's an option, I don't know, but if it is possible it may clear up the infection quicker than oral antibiotics especially with the Pred factor involved.

As for your Rituxan script not arriving yet. Don't panic. I have had them take 2 weeks to 4 weeks to turn up. They come from a Medicare office in Tasmania that deals purely with the biologics and their approvals. If you want to know where it is at, you probably call Medicare and ask whom you can speak to who will give you an idea of where your prescription is in the process.

Remember also, your pharmacy is unlikely to stock it some they will probably need several days to order it in for you.

Was it your RD's secretary who told you the infusion couldn't go ahead with this infection? I would not be taking any notice of her. I would be talking at length to your GP and RD.

More importantly I would be talking to the person who is going to do your infusions, they are the one's with the experience. They will know what can and can't happen with an infusion.

Okay, there are a couple of other things I think need to be put into place to help you are not directly infusion/infection related but I think would make a huge difference in your world.

• It is so very easy for us to become very negative in our self talk with this disease and it's complications hounding us. For myself I noticed a huge difference in my coping and illness when I recognised this and began to deal with it. My internal self talk was very dark and critical. All the time I was saying to myself things like, "I can't cope. I am getting worse. There is no hope." This stuff becomes a huge problem in us seeing our ways through this disease. When I started to instead consciously change my self talk by saying things to my self like, "I can cope. Just do the next thing. I can manage." This created a huge shift in my outlook and I could then see ways of coping that I had not in the past. Also we need to decide to have faith that something here is going to work. When you have done so many drugs and they have not worked well, your outlook tends to be despair
• Start telling yourself also that your treatment is going to work. When we have been on such a long road of medications it gets very despairing and we can easily be working against ourselves and the medication. Start believing, Janie that something is going to do the job here, that you will find it.
• Another thing that created big change for me was to stop ‘SHOULDING’ on myself. My brain was constantly telling me what I should be doing to create what I was supposed to do or have, instead of me just working with what I had. So and example of this is that I was trying not only, to be Supermom, because I SHOULD be, regardless of the fact I have RA or not. So I was trying to be Superwoman with a chronic illness and being a sole parent. I would not expect anything less of myself. Now I look back on it a few months after I let it go…I laugh at myself. It was a ludicrous and ridiculous concept that any human being could achieve what I had set up for myself. Of course, I was going to fail, it was insane. What I could do though, I discovered was to be me – single parent of one with chronic illness and work with what I had – doing things at my pace and in my way. My RA stabilised a lot at that point because I started listening to my body and also to myself instead of those critical voices in my head.
• I know you went through the pain management process a while back and found it frustrating and despairing. Since your experiences with it, I have now gone through it and have learnt some interesting things. I think that if I tell you some of it, it may make sense to you coming from me rather than medical people. I think it could benefit you being involved with a Pain Team. Now I know you have had experience with them and came out frustrated and angry. Understandable completely. Pain teams are though, experts in chronic pain management. They will do things like try lateral approaches prescribing two different drugs that aren’t narcotics but that can help some people with pain. I am on one of them. It didn’t help the pain but it does help me sleep through the pain, so I have stayed on it. The main thing, any pain team will suggest is something called pacing because unfortunately, narcotics aren’t really the answer to managing chronic pain in the long term.
• Janie, you need a Pain Management Psychologist. Mine is brilliant and comes to my home. He does not charge me.  He is based at Nambour hospital in the CHIP program there – Community Hospital Integrated Program. He is one of the few people I have talked to in the last nearly four years, who has mega experience working with chronic illness and chronic pain. Your nearest big hospital should have a CHIP. The work I have done with my pain management psychologist has changed my whole disease and coping with it. It has given me hope for the first time.
• Pacing. Pacing. Pacing. You need to learn how to do it, sweetie. That has also been a illness changing experience for me. This is one of the best sites on it available. Go on there and read all the articles. Print them out if you have too. http://www.cfidsselfhelp.org/ Everything you need to know about pacing is there.
• Since Rituxan is your next step, how about you take a new approach to it. Instead of worrying about what reactions you may have to it, start saying to yourself  how grateful you are that everything with your Rituxan infusions is going to go smoothly.

Gosh, sorry about the long post and I so hope that some of it helps you, darl.

Cordelia2008-12-17 15:28:29So sorry to hear this Janie....please take care and I hope all gets better soon for you.  Hiking_galThanks Cords, I will get back to you, just very tired at present, much love and apreciation, Janie.  Glad you have perked up! No worries, Janie. I am so sorry it took me so long to write it for you...I have been so unwell this week and first week of school vacation here as you know.

Hope something I have said helps and has maybe given you some ideas.

From my own journey I know how frustrating and despairing it can be when you have tried drug after drug without any real success. It is very easy to lose your way completely at this point.

But that is also the time when hope is vitally important and you have to find ways to keep it alive for yourself regardless of how bleak things might appear.

There is much research about how a positive hopeful attitude can help heal. I do believe there is a direct correlation but when you have been through all you have and all I have, it's not easy to pick yourself up once more and keep putting one foot in front of the other.

Hugs.
Cords, you say it so well, make it easily understandable and make me feel heaps better, thankyou, you are now known as my litle gem!  Love Janie.
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