HI guys, I have been away for a couple of days, had a lovely time with an old work mate who I haven't seen for 10 years, great fun catching up - will have to do that more often!!!!!
Just a further question about the Rituxan if anyone can help. I have had a couple of really good days and am very thankful for them, the energy and lack of tiredness is wonderful. The pain from osteo in the spine and hips is still awful but the RA pain is definitely giving me a rest sometimes. I know some have said to take things slow and not worry about the little things while waiting for it to kick in but in 6 weeks I have to be assessed to see if the drug has worked, I saw my GP on Thurs for blood test results and my T and B cells which my RD said would paint a realistic picture of what is happening showed massive elevations which my GP said meant my inflammation levels were very high and that they should have decreased???? This plus my ESR and CRP have gone up. If I don't show improvement in those areas I will not get the drug supplied again. Any ideas on why this would be happening?
Janie so sorry to hear of your problem. I have been through a similar experience in having had problems with enbrel and now waiting for word on approval of another med. but unfortunately I don't really have any speciifc advice for you. Hopefully someone on the board will be able to give you some advice. Best of luck and hugs to you.
Bump please!
Unfortunately I have no experience with your question. It certainly seems contradictory that you would be feeling better but your numbers are high...
Well...enjoy the respite despite! Glad you had a good time with an old friend!
how long have you been taking this? how much time do they give a med to work? doesn't seem fair to no allow sufficient time...I've been taking enbrel for almost a year... and while i have some great days... not all are great...but I will sometimes settle for them rather than none.. and who's right is it to say you can't too? damn. that stinks.Janie, if your RD is doing assessment work on you know for your next Rituxan and your levels are coming back to high, how much Pred are you on? Can it be increased for a short time and then bloods retaken to get you within the numbers?
My ESR and CRP have been through the roof since December. Why???? Who knows????
It's called Rheumatoid Arthritis. It is unpredicable and has a complete mind of it's own . It doesn't consult with us whether we'd like to increase our Sed Rate and our C-reactive protein for a while...it just does it without our consent. The Rituxan is also still having an effect. I get little pockets of energy that I know come from the drug.
I am about to my fourth round. Recently Buckeye told me she was about to go for her fifth round but that the fourth one had at last stabilized her for 4 months out of the six.
Your RA is severe and agressive, Janie just like mine. You are NOT going to have any first round miracles. And at this point no one can tell if it's doing anything yet as unfortunately like Buckeye and I it is going to take many rounds to see if it is going to do it for you. In the meantime, you need to get your blood work to an acceptable level for the powers that be to see your response and continue to supply it to you.
Use whatever Pred you have to, to get that ESR and CRP within the numbers they need.
With my levels increased since December I am stiff and sore beyond belief. My pain levels are high because my inflammation levels are high. I would think that is what is happening. Inflammation up, pain up. The last few months I feel 111 years old. All my joints are swollen, pain is up, stiffness is beyond awful - all of which is showing in my blood work.
With this round, Janie, Medicare threw my Rituxan application back at my Rheumy because my bloodwork was soooo high. He put me on 5mg of Pred for 5days with a blood test on the 5th day. I made it by one point and now he is reapplying. I do know what you are going through but provided you can show blood tests within 'their' limits, in no way would I give up on the Rituxan yet, in any way.
Hang in there, woman. One step at a time.
Hi Cords, thanks for your advice. I already have been knocked back twice for Rituxan because of allergies to other biologics, my RD had to make a heartfelt appeal.to get it So him being the careful person that he is (to do everything religiously by the book..... which I don't mind really), he said when he first applied for biologics for me that he will never fudge figures, or make things look like they are something when they are not, people had asked him to do it and he said he will not deviate from the rules, so I am too scared to ask him to put my pred up to get the markers down, even though I can see why it would be a reasonable request to me. He has also with my GP recently said that the pred will never go above 10mg (current) unless absolutely urgent as I have too many co-morbidities caused by the pred, and am now pre-diabetic too from it.
So unless my figures change I reckon I will miss out and then he said I will not be able to have anything subsidised for another 5 years?????? I don't know, I reckon the disease is bad but the worry from it is worse - thanks from Janie,.
Janie
I think you need a new rheumatologist. I have thought so for a while and not not said it but with what is going on with you now, I feel it's time to mention it. I think you need fresh eyes and someone who is creative and inventive.
I think Dr Herd is older and doesn't have the creative mindset. Maybe he did when he was younger but he doesn't now. He seems very, very stuck in 'his rut' of how he has always done things.
And you are right, if Dr Herd doesn't get creative here you are not going to get chances to improve that you might have with a more inventive rheumatologist.
You've done 8 years since dx, Janie and I do feel Dr Herd is holding you back. You have two sons to raise, one with his own health issues. Can you really afford to waste another five years to improve the manageability of your disease?
My opinion is that you can't.
I'm not talking about fudging, I am talking about being creative and inventive.
Both my rheumy, Dave and I believe that the Rituxan is working for me and if I keep going I will get more and more results. So when my recent high blood work was to high for the application, he was not prepared just to give up on it and neither was I.
The biologics have to have huge eligability criteria because of the cost involved, one round of Rituxan is 000 but you and I both know that blood work numbers are not a true and valid way to test your response to the drug. It's all about red tape and bureaucracy.
Honestly, Janie I don't feel you should be just giving up on Rituxan before you've even started. You can't chance giving up on a drug that could be very successful for you because your rheumy won't or can't think outside the square here.
I have felt really crappy since December and my blood work is showing it. It has not been this high for 3 plus years. I don't know why. It's just RA and what it does. Yet even through these past few months of being super stiff and sore, I have also had a Rituxan response going on manifesting itself as pockets of energy.
You, like myself and Buckeye are probably going to take multiple rounds to get the drug to really begin to control our RA. But if you don't have a rheumy who is going to be creative enough to get you through that, then you are risking a lot. Not your rheumy. You.
Also like me, you will need to get your infusions organised so that the minute you are eligable for the next round it's organised other wise you risk not not being covered by the Rituxan doses and could easily flare badly.
I am very proactive about my RA and managing it. If I was in your shoes. honestly I would up my Pred for five days and then get a blood test on day 5. I would bet you will just make it.
And if you're scared of communicating with your rheumy or asking questions or scared of his response to your suggestions...you don't have the right rheumy, in my opinion. Dave expects me to be part of any of the things that are part of my healing. My opinion is very valuable to him. It's my body. It's my disease.
You need a health team, Janie who you feel extremely comfortable with and with whom your opinion counts. From what I've observed with Dr Herd, it seems you are not proactively part of the process. You are the patient are not expected to be proactive about your RA. He is the specialist and makes the decisions about your disease without any real consultation with you. It's a very old fashioned way of working with patients and I believe obsolete.
One question - what was the date of your second infusion? At my count you are not even close to early kick in time. The first round can take up anything from 8 weeks to 16 weeks to even kick in or longer. My first round, I kicked in at week 9 and I had five good weeks. At my count you are not even up to 8 weeks yet.
I hope you understand my instincts feeling it was time to do some straight talking about all this.
Numbers were out of range so upped the pred from 2mg to 10mg for a week.
Second blood test had the numbers just under the limit and have just been informed that the scripts are in the system...
My numbers are starting to go skewwif at the moment, maybe the good times are coming to an end.
Hi Cords, I really do appreciate all of your advice but I haven't told you everything about the different RDs I have tried so while I appreciate your concern and I really do friend, I think it is only fair to fill you in, as I felt like I must come across as weak to be putting up with this DR, but in all honesty, I have never found anyone better.
I saw 2 RD's in Sydney before I moved to Queensland, they were both ok, but not easy to talk to and express my concerns. Then I saw two in Brisbane when I moved up here, both were hopeless, terrible bedside manners and did not to me listen at all.
Then I became Dr Herds patient and while I do become impatient at times with him, I really do like him, he can be very slow but he is also very thorough. He himself has sent me to trials with Dr N---, who when I asked if I could be his patient as he was closer to home for me, he told me in no uncertain terms he could not be seen to be stealing Dr Herds Patients and with my complicated history, it would be much safer to stay put. He only gave me a 10 minute consult and charged the earth, while Dr Herd gives me an hour and bulk bills me! He phones me at home to check up on me, he has given me his mobile number so that I can call if urgent and his home number! He fits me in for appointments instead of making me wait as I live so far away from his rooms. He has accessed all the right drugs for me and I through my own fears slowed down their starting times due to allergy fears, I have tried thanks to Dr H Arava, Gold, Penicillamine, Imuran, Enbrel, Humira, Orencia and now Rituxan. (All at no cost) he managed to get me on trials for some that weren't on the PBS yet, so would have been so expensive that I couldn't afford it. Whenever I was going in for my first trial of any new medication, he actually came to the hospital and sat with me, sometimes for 2 hours to make sure I was ok, I don't know any RD anywhere that is so kind and compassionate.
Another referral to the new lady Dr at the Maroochy waters rooms had come highly recommended by my RD to have a look at me for any possible trials coming up. I went to see her, she was all full of promise at the consult and said she would be helping me immediately, it was all hot air, she never got back to me, so I phoned her and her assistant told me my RD would have to do all the paperwork first, (he was overseas) but she never mentioned any of this at the consult! Saw another RD at Bundaberg, he was absolutely as rude as can be and I would never pay to see him again.
So Cordy, I hope you can see that I have tried to be pro-active, I know many people with RA and a lot of them are not 100% happy with their RD's but I can honestly say that when the chips are down and I am in real trouble, Dr Herd puts me into hospital for pain relief asap, he phones me at home and sends faxed prescriptions for pain, and he has also been the reason that I have received so much community help and disability type services. You yourself have been in agony at times and there is no way Dr Herd would let me suffer like that, I even had to try and find helpful services for you, your RD should be doing that.
I took on board what you said about being scared of asking him stuff and realised that I should not be scared (it is me, not him), so I phoned him after and he was great, he said that while there had been a 0.4 decrease in B cells in the last 5 years, it certainly isn't doing much yet, but he did say that if I felt it was working then there is no way we are going to accept a no from the PBS, he said we will do whatever we have to do to get the drug prescribed again. I told him about people on here being given extra pred, then he said I have another 6 weeks for my bloods to improve and that I should not worry too much.
So I took the bull by the horns and I am happy with the outcome. You made me think a lot about my relationship with him and again Cordy, I hope you don't think I am ungrateful, I really needed to do this and I realise how much he does help me and above all he listens.
Thanks again, love Janie. Edited by me to say He also referred me to an AP Dr in Melbourne when I told him about the roadback foundation and he fully supported me in that too until I was ready to admit it wasn't working. Sorry. also forgot to mention, first infusion was 5th Feb and then second was 19th Feb, I must admit, I did feel better straight away but it has been in spurts but very welcome bursts. I hope I haven't appeared rude as I really do not intend to be, I find it very uncomfortable when I disagree with someone and have to put my side across, lol.
Not for a minute did I think you were not proactive. I know you are. I am just a bit concerned that your RD is so ready to give up on Rituxan so quickly. Especially after all you have been through to even get it.
And I think if given a good try, this is probably the drug that can help you more than anything. Nothing else has.
I will post a more through reply when I have a chance.
Hugs...
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