Update on Liam. | Arthritis Information
Hi guys, just updating those of you who have been kindly supporting me in this awful journey with my 12 y.o.
He has had no clear response to the methotrexate, but lots of nasty side effects, so RD has decide to stop that, and to wean him 1mg a week from 10mg of pred. He is putting him into hospital in the childrens hosp for 3 weeks 4 hours away in Brisbane for rehab/physio/exercise/psychology/pain management. My hubby and I are glad something is happening but we are not sure which way to turn, this RD believes Liam has widespread generalised pain syndrome while the other Drs feel it is AS and JIA. I guess we will soon know. The paed RD is relying a lot on the bloods which are sero-negative but I thought that was rather common in kids? I am hoping and praying that this treatment might be effective as its really sad to see a once very happy healthy little boy going thru so much pain and anxiety and not smiling much anymore or playing with his friends as "he gets too sore".
His dad will accompany him and stay in the Ronald McDonald house Mon to Fri and home for both of them at weekends, ( I cannot possibly take care of him the way I am at present and I imagine there will be some sleeping by his bed in a chair, which wouldn't help anyone) thank God as I will miss them both terribly. Thank God too that my sisters are arriving from the UK this week and they are planning to support us and have some fun, so as I am really unwell, immobile, fatigued etc etc, they are going to take care of me and my other little fellow.
As for me, I am due for second round of Rituxan but I only had that brief spell in the beginning which also coincided with some rather hefty doses of hydroprednisolone, so as I have really regressed in the last 2 months, my DRs are saying they are not sure if it did anything at all????? I am very scared of it though and with Levs info on side effects and lots of research myself I am so frightened of the brain side effects, my hubby and I gathered all the info and the people getting affected usually have RA and anaemia of chronic disease, which I have too, also asked a rheumatologist at the hospital about it and he said unfortunately some people like me have tried every DMARD with little success and these people usually find that nothing is effective enough to slow the progression, I feel awful as I am so confused by it all but at present I am not going to have it again as I have two little boys and I can't bear the thought of having to leave them due to a drug side effect. Has anyone else got strong views on this subject please? Thanks in advance for any replies and your understanding. Hugs Janie.Janie, wow - that is a lot going on for you. I wish you had better news - that must be agonizing to watch your son going through so much pain. I hope the stay in the hospital is well-worth Liam's time away from home, and that he finds some answers and healing. That's a long time to be apart, but perhaps it will also give you some time to rest and heal - if there is an upside.
I have no advice on the DMARD's - you've way more experience than me on those. I seem to recall that bob_h76 had little success with rituxan and has tried a zillion dmard's. He might be getting some relief from his latest course - maybe he has something to offer.
Hang in there and thanks for the update - been thinking of you.
Mo
Thanks Mo, I really appreciate your input, how are you getting along, I hope you aren't in too much pain? Hugs Janie.Janie,
That is a lot on your plate. I will be keeping Liam in my thoughts and prayers that he gets relief very soon. PLease take care of yourself and I truly hope that the Rituxin gives you the relief you need. Best wishes to you and your family, HG
Hey girl - hang in there! If the traditional route isn't working, perhaps you might look into some of the non-traditional treatments - perhaps the antibiotic protocol? High-dose omega-3 supplementation/reduced omega-6 diet plan?
poor fella...... I hope this works for him Janie....... and enjoy your time w/ your sisters....
keep us posted on what they find out at the hospital.
My very best wishes to all of you. How marvelous that your sisters will be with you during this time of separation.
I second Jas' suggestion, speak with your RD about adding antibiotics, etc. to your treatment. I know that straight AP failed you, but with the current emphasis being on combination therapies you might find at least some relief from your ongoing struggle.
Cheers, Shug
Janie, I third and fourth Jas and Snow's suggestions. This very combination has been working for me (Waddie always knocks on wood when she says such things!). You may know, I have been unable to take MTX and the biologics are not enough on their own for me. Jas suggested "The
Anti-Inflammation Zone" and "The Omega Rx Zone" they will give you something to discuss with your RD and are very informative. I went armed with this information as well as information on minocycline to my RD's office. We also discussed Orencia and Rituxan, both of which she did not feel I was currently a candidate for at present. It has taken about 5 weeks, but I feel much better than I have since last fall.
A warning to all, don't start a protocol like Omega 3 without first researching and second and most importantly, discussing this with your RD. It can have negative side effects as well!
Janie, all the best to you and Liam in your search for answers. I know this seperation will be difficult at best, but only temporary. Please check in with us often and keep us updated on Liam and yourself! Lots of hugs and humming for you both!
Janie, I'm so sorry about Liam but it might be the 3 weeks that's needed to get him on the road to recovery. It's never easy being seperated from your child but hopefully you'll feel up to visiting him if the opportunity arises. Your sisters will be a ton of company for you. Know that we'll be thinking of you and your family. Lindy
Sending healing thoughts and prayers to Liam and family. Enjoy your sister's, they are precious.
My prayers are with you and your family. I'll never understand why some people have to endure so much. May you keep your strength and perseverance.
Thankyou so much each and every one of you, I am in so much pain right now, I can't sit here so please know I am grateful and am thinking of you all, hugs Janie.XXJanie,
You're still in my thoughts. Are you doing any better? Has Liam begun his hospital treatment yet? I hope this week brings you some relief.
I am relatively well, with almost no pain for a couple months now but dying from exhaustion.
Mo
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