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Rheumatoid Arthritis
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Posted 3/5/2016 5:23 AM (GMT 0)
Hi all,

I'm new to this site, and forum etc. but I thought it was about time to talk to someone about my issues and hope to start to mentally heal, since obviously I won't physically heal! (Yes I do make a joke out of things often, if I didn't I might be seriously depressed)

So here goes, I've had RA for 5+ years, but didn't get treatment, I basically didn't want to believe it, so I tried to just treat the symptoms, if I can't see it I'm fine sorta thing! Well it kicked my *** and well, nearing 40 my hands already started to change and I have osteopenia too now. Another issue to add to my list, seriously not joking! Guess before I start here I should give a quick timeline!
Ages:
16 - PCOS (cysts of my ovaries) shortly after this I was attacked by a drunk man in road rage, who tried to kill me, so add ptsd to the mix! (No I wasn't one of those kids that were bad, he was drunk and crazy)
20 - Had a beautiful child (now have HBP)
21 - (almost 22) - HPV CIN 1
22 - within 7 months I went from CIN 1 to Stage 0 (cancer found, but it was still only on the surface, but spread to colon, bladder, uterus, and somewhere else) 5 Leepz, 3 colposcopy's, 80% cervix gone, other organs all scrapped clear I was finally cleared by the oncologist! Yet HPV came back and never went away 15+ years still! (Also had to have a DnC and a few misses between treatment to the IC)
23 - Endosalpingiosis and Endometriosis! Ya I got a double whammy!
24 - IC (bladder inflammation), IBD and IBS
27 - car accident! Rear ended by a Mac Truck, he didn't see my car stopping for a red light approaching, and a car pulling out! Ya I have bad luck! Completely messed up inside, osteoarthritis, RSD, fibromyalgia but doctors were unsure when it actually started, and a few other hang ups from that)
- same year Hypogastric nerves removed to stop pain in pelvis.
- Spinal cord stimulator implanted but never functioned properly so it was removed 4 years later! FYI if u don't have fat in ur hips or back it moves out of place, battery sticks out badly and it won't ever function properly! Yet another great idea by a bunch of doctors!
32 - RA
36 - Hypothyroidism, but HBP finally normal without HBP meds, after starting thyroid meds)

Okay so now u have an idea about some of the issues. What am I scared of? Well I have never been on an Immunosuppressant before, and I have a lot of issues, but I have HPV still, it's never gone away but I moved a lot with the husband who was military so making sure doctors kept track of what I've been through was almost impossible. They'd give me my record but ofc when I gave it to new doctors they'd never return it in full or in order, and I mean about 2 feet of papers high. So ofc a lot has been lost, my luck I guess. None of my doctors talk to each other even though I stress PLEASE do, they still don't! So I'm stuck with only partial responses for drug interactions or disease interactions etc. Yes a nightmare at the pharmacy, and they rotate so many pharmacists rarely do they remember me, tg for technology!

So 1st question: being on immunosuppressants and having HPV, with a history of Cervical cancer, should I be worried the cancer will definitely come back now? I literally think about this 3 times a week for over 15 years, but now I'm really worried, also because pain down there has gotten worse. Feels like it did back then, and my gyno asked if I wanted a hysterectomy but I declined, I was worried nothing would get better by doing this. Now I'm completely rethinking everything. I'm a mess, I'm really worried that something bad is going to happen, idk why, but my luck has been bad for most my life, and I rarely get this feeling only had it 3 times in my whole life, each time something really bad happened.
2nd question: Urologist wants me to start Enbrel ontop of everything else, but she thinks it will help the IC and possibly the RA, but I'm really scared to start any more drugs.

Sorry so long but I thought to give u perspective into my life, I'm humbled by everything and I'm so grateful to be alive, even if I can't enjoy it like I would like to. But I have an amazing kid who has helped me through everything, and a husband who's awesome (not just saying that, but he is, most men would run for the hills, he jokes but he's always there for me whenever it's bad, and tries, actions mean everything!) Seriously I know not many men would be able to handle this, he could easily trade me in for a replacement at this age with these issues, but he doesn't. (Note the only good luck in my life has been them, and for that I'm the luckiest person in the world! Okay if u include good and bad luck that statement is probably right! Hehe). But I can't burden them with these questions, he still can't handle a lot after finally getting out of the military, and my kid is 17, and knows too much already, I can't talk to them about my worries or fears, or ask what they think about another surgery to remove another organ.

So what should I do? I'm horrible at making decisions, maybe over thinking everything too much, and definitely having weird pains that shouldn't be there, gotten worse after being on the immunosuppressant, so I'm probably just in my own head. I see my gyno this week coming up, my RA doc just took blood to make sure organs are functioning and nothing elevated. And I see the pain doc next week too (I've learned to live on a minimal amount of pain medication, meditation and breathing actually worked to train it!). Anything I decide I have to check with like 5 doctors to make sure it is safe, so if it happens it'll take a while anyways to figure it all out, especially since they don't talk, maybe longer!

Okay really sorry to pour out my life story, but I didn't know how else to explain everything and get a proper response. I think I covered everything that hippa makes me sign and more! Please reply and help if u can. I'm praying for a miracle answer, but I can't be the only person in the world online that has all these issues, or that wonders about immunosuppressants and HPV or about starting Enbrel for IC ontop of all the other crap!

If you got this far, thank you for taking the time to read all of this, it is very much appreciated. And ANY advice would be truly be amazing.

Sincerely,
Tired!
Posted 3/5/2016 6:33 AM (GMT 0)
Hello,

I too am new to posting in here. Not new to all the "junk" of autoimmune diseases and female issues. Due to tumors invading me and hormone levels sky high, I did not have a choice but to have a radical hysterectomy. (There are different types). 😒 Anyway. If you were to decide to go that route...my thoughts are this:
1. You would not have to worry as much about the cancer returning. Please note that I didn't say not at all....just not as much!!!! I want to be clear here. That is not a medical opinion mind you. Just based on what I have heard and read. Please check on that with your oncologist and obgyn.
2. If it were possible from my perspective I would keep my ovaries if I could have. I was not able to as they had tumors the size of grapefruit and a softball on them. But being thrown into menopause without those things is brutal.
3. Any surgery you have you will want to do BEFORE you start any biologics. Check with your Rhumatologist on this. I may be wrong.
4. Just to note all biologics to carry potential risks and side effects including the potential of cancer. It doesn't mean you will get it, but it is possible. There are risks and side effects to every drug. It's up to us to decide for ourselves what we are willing to risk once we are fully aware and armed with the information we can gather from our doctors, pharmacies and any other respectable source.

My information is only an opinion based on my life experience. Every single person is different and responds differently to medication and even surgeries. I have had both bad and good experiences. Take a deep breathe and trust what you know about you. I sincerely wish you well in making your decisions and hope that you have a great outcome!
Posted 3/5/2016 7:22 AM (GMT 0)
Hello Neecee and welcome to HW.
I hope you can find support here and some answers to some of your questions too.
I had a partial hysterectomy a long tome ago, and it wasn't as bad as I thought it would be. The issues I have.associated.with RA are a.lot worse. And yes, you would want that done prior to starting Enbril, if you decide to do either
The benefits of the biologics have far outweighed the risks for me.
Let is know how your Dr visits go and what you decide as a course of action
Beth
Posted 3/5/2016 4:32 PM (GMT 0)
Thank you both for the info, I really appreciate the information, I was actually looking for people who have gone thru this kind of stuff, doctors don't seem to tell you as much as you would like them too. They said partial hysterectomy but I'd have to sign something that says they might have to do a radical, depending on what they see after they open me up. That just sounds like way too much uncertainty for me. I've already had a lot of surgeries, most my adult life every single doctor whenever I move has to "see for themselves" as if the first 5 times wasn't enough!

As I said before, my doctors do not talk to each other, so the urologist wants to start Enbrel and my Rheumatologist had me on Leflunomide, but even when I try to tell them what the other wants, they still do not talk. And add the gynecologist into the mix, it's extremely overwhelming. And I haven't seen the oncologist in almost a decade, he moved practice and that was many states ago.

I have other issues associated with RA but honestly that's another bucket of worms, eyes, teeth, and other issues. Trying to even tackle one issue at a time is almost impossible but I figured I'd start with the one that's really acting up atm. The pain in my pelvis shouldn't even be bad, if any nerves have grown back, it shouldn't be this bad, my doctor even said (after they removed them) to have full regular checkups yet new doctors almost don't listen when I tell them this. Since this is the first time I've lived anywhere long enough, and finally started to listen and get everything taken care of, it just seems like they don't care, or listen when I say "crying in pain, in bed for days." If they spent a day to come see me when it's at it's worse, they might finally see for themselves. Argg the frustration and anxiety this all causes makes up lose faith in them, and think they only want money.

So back to what my actual thought is, I'll reschedule the Urologist appointment for a few weeks and try to force them to talk to each other finally. I'll ask my gyno for a full explanation of what coarse I can take with more certainty, and ask all 3 to at the least email each other. I feel like if I don't speak up more nothing will ever get answered, and I'll feel like a lemming letting them decide my fate rather than myself deciding! Which I've been feeling like this since I first left my home state! Which we'll never return to as we'd end up in poverty because of how much they raised prices on everything, and add my medical stuff to the mix, I'll pass! Only plus was they have amazing doctors up there, down here...they aren't as good, no offense but specialist are hard to find. The rheumatologist and urologist I really like, but gynecologist seems to keep me in the dark, like when I was diagnosed with the cervical cancer. They said it NEVER progresses quickly, it takes 10 years, they said! And 7 months later And tons of pain and meds and surgeries I thought I was going insane to top it off. I felt betrayed by them for telling me this never happens, than it did. (Oh before I forget after the endo's I had had induced menopause with Lupron for over a year, so fearing menopause again.)

So a partial hysterectomy would remove my cervix and uterus from what she said, I forget what she said about tubes, think those as well. But the thought of possibly removing ovaries is killing me. I have enough hormone issues, and take enough pills or shots to fix them, having to forever take more seems to really scare me. But also she said the PCOS would be there still, least the endo's would go away!

So any thoughts on how approach my doctors and get them to listen? My pain doctors are the only team that try to talk to the other doctors, maybe I can get them to reach out to the rest? And bridge some communications?

I feel like there could be a whole new profession to become advocates for patients who can't get their doctors to speak! Strike that I don't need more bills!!!

Anyways my last appointment is Friday so I'll try to let u know how it goes. Again I really appreciate all the help and support and hope u both are doing well. Having any of these issues changes ur life forever, so knowing there are others going through it as well is comforting and even getting advice on your experiences means so much! Truly thank u.

Neecee
Posted 3/6/2016 8:23 AM (GMT 0)
Neecee,

I feel for your frustration. I remember going round after round with almost the same issues of doctors not talking and pain making you crazy and all the while you feel like the doctors just want you to go away....not to really help you. Hind sight after having been through far too many ringers...they are specialists...I just wish like you that they would talk or be in the same place.

If you have already dealt with menopause from the Lupron, then a radical hysterectomy makes sense. Especially with PCOS. The extra hormones for me was something I dealt with for very long. (In the big picture anyway, long is a relative term now.) I tried a few different combinations for at least 6-8 weeks or more at a time. (They usually want you to give it 3 months. I did that with 1 combo and still was no different. I know MY BODY. If I don't respond in 3 weeks, it isn't going to work.) So eventually I just decided that hormones weren't for me.
Meantime, I still was dealing with Sjogren's, disc issues, thyroid goiters, Raynauds, newly diagnosed with RA and had 2 toddlers at home. Was the worst timing for all this mess ever! I already had several abdominal surgeries not including the 3 c-sections (classical cut belly button down). Had started getting epidural injections for back and neck pain. Weight was coming on fast with all that and being hypothyroid.

Anyway...what I was getting to is this. Bring your printed results with you along with plans of action from each doctor to every visit to every doctor. Along with any and all medications and supplements you are taking. (Just in case there are any interactions or potential ones.) One doctor might know something another one might have forgotten to mention. If you researched anything you feel is really important or want to know more about that can be answered in 15 minutes or less, then take it with you prepared with your questions or comments. When I started carrying a binder and a notebook with me to my appointments, my doctors started taking me a lot more seriously! I have 1 section that has my medications with names, dosages, amount, when I began taking it, and when I stopped taking it. I have a section with bloodwork results most recent always on top and from every doctor. This helps me see my own trends over time. I have a section for surgeries and injections with reports. If I have any CD's that have MRI's or X-rays on them, I bring them when it is necessary. I keep a list of ongoing questions and answers in a notebook so I don't repeat the same question and can refer back to it. This helps me with my brain fog. Helps me show the doctors I am very serious about my health care and won't be taken lightly. I hope at least some of this is helpful and gives you some hope. Oh, and if you can....have someone go with you to your appointment. Don't give up on finding the right doctor either. I've gone through lots and lots to finally get to some good ones. And sometimes life happens to even the good ones and then you have to change again. (one of my favorite doc's spouse got cancer and was never the same after that.) Now I'm rambling even more. Geez! Ok I'm stopping now and I hope I have helped just a smidge. Here any time to chat to!
Posted 3/8/2016 5:08 PM (GMT 0)
Argg, okay everything just reset while entering it!!! Ffs I hate online writing at times!!!

Thank you so much Wace, that's very helpful, I never thought of doing that to that extent, I've written down thoughts or questions but never thought to put it all in a binder and bring it with me with segments for results, blood work, injections, etc. I don't know why I never thought of doing that like we did homework back in high school! Brilliant, seriously thank you! And yes brain fog is real, and happens often! As for bringing someone with me, the husband isn't really ready for heavy issues or emotional events, he'll take me to surgeries and help with doing things through recovery and keeping the kid relaxed through it all, but details might send him into a bad place. And we don't live near family so it's not as easy to have someone come with me. 😥 And feel free to ramble away, I don't mind at all, the more information the better! You'd think at this age I'd have it together, but still learning!

Now to update, saw gynecologist yesterday, and she said they would go in laparoscopically, but if there's too much Endo's, or ovaries are looking diseased or worse, they'll have to remove them, and have to open me on existing scar on pelvis. They'll also remove all Endosalpingiosis or endometriosis found and biopsy everyone to make sure it is just Endo's. They'll remove scar tissue off bowels, bladder or other organs or ligaments that might have any from past surgeries, etc. But still having so much uncertainty is scary, she said that I can decide when I'm ready to set the appointment for surgery, and that recovery is only 4-6 weeks, so if I do it now, I'll be fine for my kid's graduation and my reunion!

Still there's always been this odd thought in the back of my head, if it's meant to be God would do it or let it happen, with getting pregnant even at this age or not! (Even when I had the DnC, miscarriages and other horrible stuff, I knew God would be okay with it as I had cancer down there, and it wouldn't have ended well for the child or me, even my priest said that anything I had to do for my life and an unborn life had to be done, especially having a baby at that time. He said I had to survive to be there for my child, and God forgives if I asked for it. Still the Catholic part of me worries about all of this.) But I'm so tired of the pain, it's gone from horrible to bearable over 21 years, that it being even really bad now, on hormones, at this age I'm done. But still that thought of beliefs and science have me at odds again, 15 years later! When u have cancer it's a little easier to accept having something done morally but having this done to stop pain, and damage, and be proactive about cervical cancer is a bit harder to swallow. See a stupid dilemma to even put into my head. I don't know why I even think this.

My gynecologist also said I don't have to stop taking my immunosuppressants during and after surgery. But I shouldn't start a biologic anytime soon. So now I'm also confused on what or how to address the urologist, so I'm canceling tomorrow's appointment till I'm ready to talk to her!!! (Avoidance always works for me!)

I wish there was a rule book somewhere that would easy my mind about things. Or even some kind of awareness to people about the struggles we go through in deciding what to do about our health and how we struggle to decide exactly what we choose. Would help to make family or friends understand better and not judge...yes I've learned people judge no matter what, you might not but most will. 😰

So how to decide when to schedule it? And how do I talk to my other doctors and explain how I am feeling about it all. Seems simple in thought but it is never simple, especially with all uncertainty. I haven't even spoken to my family about it all since she said yesterday it is the best chance for healing my body finally. And still wrapping my head around me definitely never having kids again. A big plus is no more pain when having sex, small on scale of the rest, but a great thought. Hehe! 21 years of that does a number on someone! 😝 Oh and the RA can't interfere with the endo's anymore and make it worse, omg I just thought of that! That is an amazing thought.

Okay now I'm really rambling again. Thank you so much again! Now Friday I'll get to talk with pain doctor on what to expect with recovery and how to manage that pain, really hate fibromyalgia it messes with everything.

Also since you said you're recently diagnosed with RA, careful how quickly they change meds on you, I have a severe reaction to Plaquenil, after 6 weeks, I started itching uncontrollable 24/7 with hives, and I haven't taken a hot shower in 3 months because the half life was 40 days and full life 178, so the allergic reaction can last really long. After about 45 days the itching stopped full time, but still occurs after showers, so I have to take a pill to shower! So make sure to tell them everything, even a small itch/hives should be reported immediately. I had hives on my wrist for a week after I started taking it but it wasn't bad until the 6th, they thought it was the RA not a reaction at first. Hence add it to your booklet if it happens, you probably do but thought to tell you! And some meds take 1-2 months to start working but I normally start to feel it after 3 weeks, I'm hypersensitive so if you're like me, you'll feel minor effects right away. Only good part!

Okay talk to you soon and thank u again'
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