Still sitting on hold!

Well I have not treated RA since June 27. Since no RA meds did a cleanse. I have been drug free for nearly three months. I am in an obscene level of pain. I have recently started heart meds back. My BP was far to volatile.

Despite the pain, I must admit I feel much better. The side effects are just to extreme. I see an internists on the 4th of October. I refused Actemra until they evaluate both Diverticulitis and hypertension. The nurse who administers infusions was quite put out when I refused to schedule infusion lol I hope I mentioned her comment ,"Doctor knows best". If that where true, I would not have gone ten years undiagnosed...

My Rheumy, is awesome. She called to schedule internists prior to proceeding. She also ha let me direct which drugs I am willing to consider given pharmacogenetics.

I have been stalling. I am finding it difficult to talk myself into starting again. I still do not sleep more than an hour at a time. I feel like a zombie most of the time.

I take great comfort in reading posts on this site. I do feel terrible for those who are seronegative. Dealing with insurance companies and doctors can be so frustrating. I now go armed with all my blood work via my e health. No more negotiating. They just do what you ask, it is so much easier.

Tonight I am tortured by fear of the unknown. How do you plan when it is impossible to predict from one day to the next if you can function? I am so afraid to start anything or schedule even casual activities. It is so very frustrating. but I know I will find a way to reinvent myself once again...stay tuned warriors and hang tuff

15 Replies

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  • Hi

    I'm so sorry to hear of the pain you are in. The drugs can certainly be very scary and when you have suffered a lot of side effects, the idea of taking something else can be really hard to contemplate. However, I am concerned that being drug free doesn't seem to be helping you very much at the moment, and I worry about you continuing in this pain and about any joint damage that might be going on under the surface.

    For the majority of RA patients, the drugs are the only proven way of getting the condition back under control and preventing damage. While 10 years is a very long, frustrating time to wait for a diagnosis, this does not automatically mean that the doctors do not know what they are talking about, as this can be a very tricky condition to diagnosis, due to the lack of a single, definitive test for the disease and the variable way in which it comes on in individuals.

    It is good to hear that you have a consultant you are happy with now, and I think you need to speak honestly with her again about the struggles you are having and the concerns you have about Actemra or any other RA medications.

    I really hope they can find something to help you very soon.

    Kind regards

    Victoria

    (NRAS)

  • I agree completely Victoria, I intend to start Actemra after the internists rules out complications from cardiac condition. I normally stress that although I am always looking for natural remedies it is not to the exclusion of traditional approaches. Only to do all I can to improve my condition in support of my health care team. I DO NOT believe that no meds is the way to go at all. I simply want to make it clear that it is my body and only I decide what goes in. If a doctor wants to give meds great but they need to justify it now. I want to be informed of all options. No more "Doctor knows best". I am well educated and able to review research and decide for myself which options are best for me. Not that I recommend that approach for anyone else.

    I also do not do this without my doctors being kept informed of what I am doing. I also monitor blood pressure, vitals very closely. This is not the best approach but one I found necessary. I have six specialists and they where all prescribing drugs at the same time. My poor body was completely overwelmed. I weigh 101 pds. Not all lot of room for error lol...my Rheumy is very involved in this process. I am not taking foolish risks. Also, I am fortunate in that my genes give me a higher than average pain tolerance..not that I do not feel the pain...

  • Hi

    I think it's great that you have a supportive rheumatologist. Unfortunately I sometimes hear from people trying non-drug approaches that their rheumatologists refuse to see them anymore and discharge them because 'if you're not going to follow the approach I suggest, what's the point in seeing me'. I think this is happening less, and as you say, this attitude is becoming more of a thing of the past, but sadly it does still happen sometimes. Far better to keep seeing someone, be monitored and as you say, make them fully aware of the approach you are using and make the decisions together.

    As you know, when you start Actemra it is likely to take a few weeks to kick in, so it would also be worth getting advice on pain management from your doctor and rheumatologist. I am sure you will have already looked into this, but of course there are various ways of helping to manage pain without medication if this is something you would prefer.

    I hope something works for you soon.

    Victoria

  • Hi Victoria - That was my rheumy's initial reaction the first time I went to her. I didn't know about any alternative treatments, I just asked her please to find something else other than MTX to put me on. She almost kicked me out then, but I got her calmed down and agreed to try it at least. I just think it's an interesting reaction for a physician when someone is obviously scared...

  • Thank you, Being Canadian in health care is a very different experience. I see my Rheumatologist almost every three weeks. Unfortunately, we have been unable to find a drug that works, yet. It is also important to remember the insurance companies rules..I am on group disability as well as Canada Pension Disability. With GWL, they will cut you off if you do not comply with physicians recommendations. What they do not tell you is; this can only be in forced for a period of one year. If at that time there has been no measurable result, it is up to you. So before making decisions like stopping drugs, even if temporary, check to ensure it will not affect your coverage..

  • I too am on GWL disability. Once you have been on GWL for 18 months they ask you to apply to CPPD. You should be able to stay on GWL until the age of 65. Is this not the case for you?

  • In addition to my pet supply store I have been a Financial Planner with Freedom 55 Financial for twenty years. Which is why I have been focused on collecting my CI. It has given me a whole new appreciation for the impact of labels. It affects not only government plans but private plans as well. There is a fantastic article written by Dr Franklin Adams on the Identity Crisis in RA. I will try to find link as it still impacts everything medical.

  • Also for people new to this ordeal..I have already proven drug resistant to four DMARD's and two Biogics. Not to mention allergies making many drugs unavailable. I am not promoting, no Meds, only pointing out that it is a very individual experience. We all respond in unique ways. Even if exploring natural options , not mutually exclusive. Both is your best approach..Warning, there are many sharlottens out there.One example, someone posing as a doctor MD. Wanted to charge 1300. For four classes on Transcendental Meditation. I interview him and discover he is not a doctor at all. I have taken steps to shut him down. There are many out there poking to take advantage of people desperate to stop the pain..Shame on them but also buyer beware. If it sounds to good to be true is usually is..

  • Interesting - I had never heard of the Paddison Program, but a lot of what he is talking about (gut health specifically) I have been working on for quite a while too. Thanks for some new information

  • Thanks Kai - I dunno - I'm thinking "may the force of the microbiome be with you - ha ha ha - Sorry - I get silly sometimes- :-). And I agree that this all takes time and work and dedication, and hmmm - what am I missing? Oh yeah - clean underwear - ha ha ;_)

  • Ha ha ha - It will do VERY well ma'am! :-)

  • A very good read. Thanks for suggesting it Damage

    the-rheumatologist.org/arti...

  • sorry 4 yr pain - my mtx withdrawn and feel similar - see my earlier post 2day - but why hang tuff - if u fight the pain u r tensing up... go with the flow lke yoga n acknowledge the pain n it may subside slowly. pleeease don't dismiss all drug options - i hated the idea of mtx but it did help n i want it back xx

  • Hi

    I don't envy you the pain, but while you are drug-free is there anything natural that you can try?

    I picked up a book about beating arthritis in a charity shop last week - not the kind of thing I would pay full price for - and it is about CMO (Cetyl Myristoleate), which seems to be a naturally occurring fatty acid. I would try it myself, but I am already on two immunosuppressant drugs which would stop it from being effective.

    I understand what you mean when you say that you feel better in yourself, despite the increased pain levels. I used to be very much in tune with own body, but since taking drugs, I am a stranger in my own skin - not knowing what is illness, and what is drug-induced, what needs to be reported and what doesn't. And worse, reporting but not being heard.

    It is inspirational that despite everything, you are so positive! I hope you manage to find the right combination of meds soon.

  • Sad statement Em13 - "Reporting but not being heard.."

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