Follow-Up with New Nurse Practitioner
Another good visit all in all. The nurse Joyce is great. Shocked her by telling her a bit of my past. Especially about the not walking part and docs at the hospital saying how it was unlikely I'd do so or even live at home. Her jaw dropped and she said, "So where are you living now.?" When I told her that I've been home since Nov. 2011, she was happy to hear that. I've somehow managed to drop 2lbs. It took no time for Candyce to come in. I like her. She's not the type to sugar coat things. She did acknowledge that she had to tell me things she knew I was likely aware of just to make sure I knew. It was nice to have it acknowledged that I am a pretty-well informed patient. There's a lot of good news/bad news. Good news on x-rays: my cartilage in my knees is not bad. Which leads to the bad news (that was no shock to me as I had a guess what showed. The pain and swelling is RA, not OA. There's erosions, which to be honest is not shocking as out of the 28 years I've had JRA/RA, I wasn't on DMARDs until 2002. I was on Plaquenil/MTX in varying doses for a little over a year in 2002-03, then off meds until 2006. And then I was on MTX, Arava, Imuran, Enbrel, Humira, and Remicade in various combos until Aug 2008 when I went off Remicade because I lost insurance. I did have Arava, Neurontin and some other meds until Dec 2008 when I got sick on Dec 12 with what I had thought was the stomach flu at first, but after 3 days realized was likely not the flu and was possibly another UTI. Then no DMARD until I restarted Arava in 2010. But that's another story for another day...or week. So the fact there are erosions in my knees, hands, and wrists wasn't too shocking. She doesn't think Arava is enough which is why she added Plaquenil, it's as much for the Sjogren's as it is the RA as she did say Arava doesn't really help Sjogren's. She is planning adding Rituxan but NOT until I can deal with the dental issues that the Sjogren's has caused, because she said to do so is basically sepsis waiting to happen! Even if she felt the risks outweighed the benefits, which I don't see any sane, responsible doc doing in my case, I'm not too willing to risk it, given what all happened the last time I had sepsis. Missing 3 full months and large chunks of another 6-9mo of my life is NOT something I want to risk if I can help it.
Again she addressed issues before I could ask my questions! On my list was med refills and we started with that list. I also wanted to ask about her mention of a shingles preventative at my first visit. I wondered if, since the treatment for shingles is the same med as for other forms of herpes (antivirals like acyclovir, valacyclovir, and famciclovir) and the maintenance dose to help lessen the chance of outbreaks of the other forms is taking the med that treats it in a lower dose daily. I don't recall what I was on dose wise for treatment but she verified that I was right in thinking that the treatment and preventative meds are the same ones and she put me on acyclovir 200 mg, once a day. (I later recalled that the 3 times I do remember being treated for shingles, I took meds something like 5 times a day, and the dose of acyclovir for treating shingles is 800mg 5x/day.) She also decided that since my BP was up (for me not as much as it has been in the past) around 140/110 we're treating it. She chose a beta-blocker, metoprolol er 50mg/day. I was on metoprolol in the past. So that's good because I don't recall any side effects. Except good ones, such as less headaches, because it lowers my BP. When my BP is high, I tend to get really bad headaches.
My DEXA scan showed severe (although she didn't give me the numbers) osteoporosis (OPO). Again, just part of corticosteroids, although I forgot to mention that I'd had the OPO dx long before ever taking any form of corticosteroids. And of course she is putting me on something for that. I don't have details yet; she said I'll probably get a call within a week or two. She is referring me to a place called Palmetto Infusion (where I went for my Remicade) for Reclast. She likes that it's once a year and I'm done. Little chance of me being non-compliant! I am good with that. But she said it will do little good to start Reclast unless she also addresses the issue with my Vit D being very low (again no mention of level). I can ask for copies of labs and the results of the DEXA and x-ray reports. I just had so much on my mind that getting that was the last thing on my mind! So she prescribed Vit. D3 50,000 IU once a week for 12 weeks. I did forget to ask if she wanted me to continue calcium w/vit D or switch to straight calcium and what dose she prefers me on so I called and left a msg with Joyce about that.
Her plan for AFTER I deal with my teeth is to have me get Rituxan infusions. And then after awhile on that and hopefully seeing the improvements many people see, she will send me to a DO who has a good success rate with helping contractures as well as starting pool therapy. I need to let her know of the issue I have with even heated pools causing me to have serious muscle problems for days after being in the pool and doing nothing (since I can't swim) but stand in shoulder deep water. But, who knows, I may not have that reaction any longer since I am on meds and when I had that reaction I wasn't. That was right around my fibro dx. She did say IF I wanted PT we could discuss it then. So basically neither she nor Dr K wants me to have PT right now! Which is good and bad. So I get to look for options for dental ins. and possibly have to wait out the pre-existing issues clauses. But I'm not dealing with ANYTHING else health related today except a stop at the pharmacy. Tomorrow is soon enough. But today I have other plans!
I have the remainder of the eye testing Thurs. and then NOTHING ELSE until the end of July! YAY!!!! I don't go back to Candyce until 9/25. She gave me 3 mo of everything with 1 refill on everything except the Arava and Vit D. So, can't complain there! My biggest concern was not knowing how she was on pred use and then what happens when it started causing cataracts. But she seemed to feel as I do about it. She acknowledged that she was sure I knew a few things about pred but that it is a band-aid approach that controls the symptoms not the disease. I am aware of that but given I cannot take NSAIDs daily, pred is my best option (although somewhere I read that it has DMARD-like properties in addition to the anti-inflammatory ones but that's not many who feel that's true). She also said that cataracts are common with pred use, especially in higher doses or with long-term use, both of which fit me. Although that high dose no longer applies and I am trying hard to keep it that way! And so aside from forgetting I needed that script, which she asked me to double check and make sure she got em all and when I looked, I missed that she skipped 2 meds I needed. I caught one before either of us left the office, just as she was walking out the door, but the pred I didn't catch until late last night when I was telling Mom about my new meds. But I have enough to last until sometime in July so I can call and ask them to either call it in or have Gar pick it up sometime between now and when I run out.
My meds are now:
Acyclovir (shingles prevention), Arava (RA), Folic Acid (side effects of Arava), Guaifenesin (chronic sinus congestion), Methadone (pain), Metoprolol (hypertension), Neurontin (neuropathy), Oxycodone (breakthrough pain), Plaquenil (RA and Sjogren's), Prednisone (RA), Prilosec (GERD), Provigil (sleepiness), Reclast (osteoporosis), Robaxin (muscle spasms), Salagen (dry mouth), Vesi-Care (bladder problems), Vit. D (Vit D Deficiency).