[buffster]

I'm afraid that this will be quite a depressing thread as that's how I feel right now :-(

Basically I was diagnosed with UCTD (SS, AIH, poss Lupus, Fibro and a few blood conditions) just over a year ago and so far have tried Plaquenil and Azathioprine but had serious reactions to them both. I am on prozac, pred and Amatrypline (for fibro), diclofenec and paracetamol.

We have just moved and I saw my new dr here in Bristol yesterday and she was so negative about my longterm outlook saying that the best I could hope for is that I stabalise for as long as possible and that I should accept I may never be able to have anymore kids. I have a little girl who is the light of my life and I would love more than anything to give her brothers or sisters.

The steroids have made me put on so much weight, we are broke because I am not working, and I feel like such a fat ugly failure. Everyday I am in so much pain and I can't stop sweating which makes me even more selfconcious, I have zero sex drive and wonder if this is it for me?? At the age of 31 is it all pretty much over????

I have to wait for another few months to see my new Rhuemy but I don't know what drugs I could try next as the Azathioprine almost killed me :-( What if the next lot do???

I guess I just feel so sad, lonely and overwhelmed by it all. The last year has crippled me emotionally and physically. Sorry to be so negative :-(

 

[Nutty]

No need to apologize buffseter; you have an awful lot on your plate that you are dealing with. I can only sympathize with how you must be feeling.

Is it a new family doctor that you saw? Your illness may be over her head and she doesn't know how to address your health issues. If she is negative, maybe she is not the doctor for you? Can you look for a new doctor? Hopefully things will be better when you see your new rhuemy. I'm not up on all the drugs, but my doctor tells me that there are a lot of options and not to give up if one drug is not working. So, there must be something they can do for you.

I wish I had some answers for you, but unfortunately this is a terrible disease and it affects all areas of our life (e.g. family, finances, friends, etc.).

Post often and visit the chat room. You may feel less lonely. It certainly helps me to know that I can come here and people truly understand how I feel. I too wish I had more support close to home, but I don't. So, this forum is my saviour.

Sending you positive vibes....

Nutty

 

[Maia]

I'm sorry to hear about the difficulties you've had with your health, and then to have to hear a doctor be so pessimistic would be terrible too. It's no wonder you are feeling so down.

There are definitely other options left to try to get an improvement (quinacrine, methotrexate, Cellcept). What are your chief symptoms of your UCTD that need to be addressed? There are other options for pain control too, many have to try several different NSAIDs to find one that works well. A pain management doctor is also a good option for someone that's been in pain for as long as you and is not finding relief.

As for the sex drive issue... Prozac is renowned for eliminating any sex drive an otherwise healthy person would have. There are other antidepressant medications out there that do not have this side effect. It would likely be in your best interest to ask about switching to another medication or seek out specialist/psychiatrist care since this med does not appear to be helping you anyways & is likely adding an additional unwanted side effect.

It most certainly is possible to have children after an UCTD or lupus diagnosis, many here have done it (myself included!). I don't think it's right for a doctor to tell you that you may never be able to have children again. Especially at this point, just one year into it. Ultimately, it's up to you as it's your choice and your body. It helps to think about it like this... for me at least!

Good luck to you & I am hopeful that we'll hear a more positive update from you in the near future. (((hugs)))

 

[suebehar]

Buffster, please don't give up hope! I was diagnosed 2 1/2 years ago and felt much the way you do now. I had a bad reaction to prednisone and I was coming down with new symtoms daily. My flares were totally out of control. My doctor kept trying differnet combinations and finally I am now feeling there is hope. I'm currenlty on plaquenil, methorexate, Keflex, Humira, Mobic, Zoloft, Lunesta, Aciphex, folic acid and an iron supplement (my cabinet looks like a pharmacy) and I'm finally getting some better results. Be patient, but persistent with your doctors. Even though I know you don't have the strength, keep trying to let your doctors know how you feel. Don't give up hope. Lupus is such a wacky disease. You can go totally haywire and then have some relief.

Good thoughts to you,

Susan

 

[Joandublin]

Dear Buffster

Many hugs to you :hug: :hug: You sound so very sad and depressed. You have had a terrible upheaval in your life and trying to come to terms with having so many chronic illnesses is very difficult. No wonder you feel fed up :hugbetter:

I think all of us who struggle with these blasted diseases and the never ending saga of trying and testing medications can understand how you feel. Of course it must be extra worrying for you knowing the bad reaction you had with some of the drugs you have tried. Its always a worry trying different medications but it must scare the heck out of you :worried:

Your new doctor certainly doesnt sound like someone you would want to be around very much. When is your Rheumy appointment? You mentioned a couple of months? Is there any way you can badger them to get in sooner telling them how unwell you feel?

I would also ask your doctor for a referral to a psychiatrist as well. It sounds like you may need to change your anti depressant and a psychiatrist will be the one with the specialist knowledge to help try and find one which suits you. Also I think its important that you get some space to talk about how your illnesses are impacting on you and your quality of life. Depression can be a part of Lupus itself or, indeed, a reaction to it. Whichever comes first it really doesnt matter because whats important is that you have someone you can talk to about how you are feeling and who can help you. I see from your last post that you had to give up your home and move back with your mum because you couldnt afford to stay in your house. That is such a massive upheaval and adjustment to make.

Please try and get some help for the way your are feeling Buffster. Its amazing how those kind of supports can help one cope in such difficult situations. The Forum is always here for you but it cant replace proper care if you are seriously depressed.

As far as the drugs are concerned, Maia mentioned Quinicrine as an alternative to Plaquenil. In the UK its known as Mepacrine but has to be got from a compounding pharmacy. Ask your Rheumy about it. It has fewer side effects than Plaquenil and although its effects are best where the skin is affected, it also improves fatigue and helps with arthritis-arthalgias. Given the fact that you cant take Plaquenil I would think you have a very good case for trying this drug. It seems like you need to have a very frank discussion of your options with your Rheumy at your next appointment. Dont be afraid to ask up front what options are available to you and you can always come back here and talk them through with others as well.

I just hate that you are feeling like a failure. You didnt ask for these diseases and Im pretty sure you are coping as best you can given all your circumstances. You are still the same person inside Buffster. Dont forget that. None of us know what is ahead of us and there could be many good times ahead for you. You mentioned your little girl and how she is the light of your life. Of course there is the possibility of giving her a brother or a sister but right now is the time to concentrate on getting the best healthcare you can. You deserve it.

Just remember that these disease can wax and wane and can even go into remission so there is always hope.

Much love and strength to you
Joan:rose:

 

[confused1]

((((((( Buffster))))) You didn't go out looking for a life-changing disease. You didn't make a decision to become so ill that you can't work. 'So much of what happens to us in life is because of our own actions and decisions. But lupus (and the other attendant autoimmune diseases) are different. I think we've all be taught to look to our own actions as the root of our condition. That brings on guilt and depression. Just remember, you didn't ask for this. You didn't make a bad choice at the disease store. Disease just came out of the blue and whacked you on the head.

I understand your sadness and depression. It's hard to look in the mirror and see what the disease and the meds have done to our bodies. Nobody will judge you as harshly as you judge yourself. I know, if we were together, I would look at you and see a beautiful person. And I know your daughter sees that her mom is beautiful and wonderful.

Nobody can know the future. The disease ebbs and flows. I have a good friend who has been in remission for more than 10 years now. She's my hero and my role model. She is proof that lupus can loosen its grip and that some of us do get better. And stay that way.

So, regardless of what your dr. says, don't forget that the future may be ever so much better than the present. There are a host of meds (and combinations of meds) to try. Some are bound to work for you. Try to believe in the possibility of good. Remember to believe in yourself, and to love yourself -- just the way you are right now. Live one day at a time. And come here and vent any time you need.

I hope to meet you in chat one day.

Hugs,
Sunny

 

[halfpintfl]

Hi Buffster, I am so sorry that you are feeling so down right now, I have been where you are now. I was diagnosed
for over a year, and all that time, I just couldn't get my
head wrapped around the whole idea. Then ,as I believe that knowledge is power, I began reading everything I could get my hands on. That helped some, but I basicly stayed in a state of "not knowing" till I began reading this site. Read the info at the front of this site, it will ease youre mind tremdously, as well as help give you hope and courage. Then do just what you are doing now, ask question and keep asking them. We are all here to help and support each other always. With the right Rheumy, and
the right meds, you can live a very productive life. Keep posting and asking questions.:wink2:​

 

[Sonya in KS]

Buffster,
Wish I could help you, but I do know exactly how you feel. I had worked so hard these past 4 years to take off 65lbs and now in just 3 short months due to Prednisone I have gained 45 of those pounds back. I had already given away all my large clothes, so now I have nothing to wear. Also can relate to the no money as I'm unable to work also. We are so broke and medical bills still coming in from my hospital stay. My insurance is not a good policy and they are barely paying on anything. Oh well, this too shall pass! I have to look on the bright side of all this, it's better than the alternative! Somehow we will both get through this ordeal and be a better person because of it. Keep me posted on how you are doing.
Sonya in KS

 

[Kenzmadie]

Prozac is most likely effecting your sex drive. It can not only decrease your desire but inhibit your ability to orgasm. I have also heard of excessive sweating as a side effect of prozac. You might really want to discuss other antidepressant medications with your doctor. Not only is your mood not improving, but the medication may very well be adding to your misery. So sorry things are hard right now and I do hope they get better for you.