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duffybear
12-30-2014, 03:48 PM
Given that I was only diagnosed 10 days ago, I am very new to the medication(s) and this condition. It would help me to have some feedback about what's happening.

The respirologist put me on 50 mg. of prednisone for 8 days, then I dropped down to 25 mg. (for the next 2 months). That's for now; I assume a rheumatologist will (hopefully) get involved soon, and maybe he/she add something else. For the first 2 days, needless to say, I was the healthiest and most with-it I had been in months; about 90% of my symptoms disappeared. I probably pushed myself too much. I then had a slight fallback; more sinus issues (not a lot) and some cough. Now that I've dropped back to 25 mg., I'm getting that again - another slight increase in symptoms.

I assume that, unlike most medications (e.g. such as antibiotics), one doesn't necessarily experience a steady improvement on prednisone and other meds. I am guessing that my poor little immune system is chugging along, trying to cope as best it can, and not necessarily knowing what the heck is going on (especially if I push myself). So things may be all over the place, to some degree.

Does that sound accurate? I am beginning to suspect I need to (1) not expect uphill progress all the time (but hopefully some of it!) and (2) learn to pace myself! I guess I need to figure out "the new normal" in my life - which may be a moving target.

Pete
12-30-2014, 04:14 PM
Hi Duffy,

Since the only med you mention is prednisone, I'm assuming that you're not taking any immunosuppressant. Your rheumatologist will probably put you on something.

Usually, a beginning immunosuppressant is pretty strong to get the disease into remission. If your doc treats you traditionally, you'll probably go on either cyclophosphamide (cytoxan) or methotrexate for a few months. These drugs are cytotoxins - chemotherapy drugs used to kill the abnormal white blood cells that are attacking your body. You may also get infusions of rituximab (a biologic originally developed to combat non-Hodgkin's lymphoma) that accomplishes the same thing with fewer side effects. These drugs do not act as quickly as prednisone. You'll probably start feeling noticeably better within a couple of weeks on cytoxan or methotrexate, but it will take 4-8 weeks for the full effects of rituximab to kick in. Once in remission, you'll probably go on a maintenance dose of something - could be methotrexate, cellcept (mofetil), or azathioprine (immuran). You may also get periodic infusions of rituximab as maintenance therapy. One note about rituximab - it's frightfully expensive. List price for the two infusions I had in October '13 was almost US$40,000. Fortunately, I have good insurance, and my copay was only US$40. My doctor had to get my insurance company's permission for this treatment.

You may see your prednisone dosage adjusted back to the dosage where you felt good. You'll hold there for a while (few weeks to few months) until you become stable. Then, you should begin a gradual taper off. The danger of tapering too fast is that your adrenal glands may have shut down and will not produce enough cortisol (the body's equivalent of prednisone) and you'll flare again. As an example, it's taken 14 months to taper me down from 60 mg of prednisone/daily to 3 mg. I've felt good all along the way.

Drug therapy with this disease is a balancing act. Your doc is trying to maintain a balance between suppressing your immune system enough to keep it from attacking your body while still maintaining some degree of resistance to other bugs.

There is also the matter of side effects. You should make sure you fully understand what side effects may manifest with different drugs and follow your doc's instructions for dosing and other preventive measures. As examples, if you're on cytoxan, keep well hydrated and don't delay urinating so the metabolites of cytoxan don't mess up your bladder too much. With methotrexate, don't consume alcohol (and if you do, use extreme modification). I have one or two alcoholic drinks once every 6-8 weeks -- usually a glass of wine or a beer or two.

Having said all of the above, I'll give you the advice that the doc who diagnosed me gave: Take your meds as directed, and live your life to the fullest extent possible. It is possible to get back to close to your state of health before the disease. I'm lucky in that regard. Others may have to adapt to a "new normal" that involves a lifestyle that is restricted or altered to some degree.

Hope this gives you some idea of what your future may hold. Good luck, and don't be afraid to ask questions or ask for advice.

duffybear
12-30-2014, 04:45 PM
Pete - thanks for the very descriptive rundown. The respirologist described my GPA as "mild" (thank heavens for small mercies!), so that is why I am hoping prednisone will do for the meantime, but I know I need to ask ASAP at least about either cyclophosphamide or methotrexate. ( I suspect I got caught in the pre-Christmas "rush"; everyone was going on vacation the next week, so unless I was dying, they weren't in a huge rush.)

I guess my primary question is: do people often feel quite up-and-down with the various meds? I'm just not used to being sick (again, thank heavens) so I'm wondering if this she's-up-she's-down thing is just something I'll need to live with, to at least some degree.

ozterry
12-30-2014, 06:24 PM
Hi, I started on 50 mg prednisone, now down to 20 mg, but I take cyclophosphamide tablets 150 mg daily. The ups and downs are there all the time for me at least. There is a lot of variations with this bloody disease, none of them especially good. You just need to learn to go a bit with the flow, no matter what drug regime they put you on. The ups and downs are just a part of our life now. If you have not read the post, I suggest you read the story of "spoons". I haven't got the link but someone will post it here for you. It is not always a good disease to live with, but always better than the alternative. Hang in there, enjoy the up times and try not to let the down get to you too much. Tiredness is something we all have to deal and live with.

Terry

duffybear
12-30-2014, 06:50 PM
Hi Terry - thanks for the feedback. On some gut level, I've divined this is a major, permanent change, I guess I just needed someone to say "yup, me too". (I have no doubt that Pete's tagline, "Every day is a good day. Some are better than others", pretty much refers to the same thing.)

(Btw - on a completely different note - as a minor cyberstalker, I notice that your profile says you're into ancestry research, me too).

Susan

Pete
12-31-2014, 01:22 AM
Hi Susan,

I was also told I had "mild" Wegs. Once I was put on high dose prednisone (60 mg to start), I started feeling pretty good most of the time. I also started out on 150 mg of cytoxan. After 2 - 3 months, the disease seemed to be under control, and I felt pretty good, although pretty weak from the opening episode.

One of the things that helped me was regular exercise. I started out slowly (walked the hundred yards to the streetcorner and back) and gradually kept putting one foot in front of the other. The exercise helped me sleep better. It also helped me regain my strength. I'm now able to walk three miles at a brisk pace (16-17 minutes/mile), and I plan to resume lap swimming and weight training next week.

One thing about prednisone: You will gain weight if you're not careful. I lost about 25 pounds during the opening episode. Once I was on prednisone, I regained the lost weight and put on about 20 new pounds -- mostly belly fat. I ate everything that was on my plate -- and more. It's taken me most of four years to get the weight off, although I only really began trying about a year ago. Perhaps a way to minimize weight gain is to eat mainly fresh fruit and vegetables with a moderate amount of meat. Recently, I found that cutting out potatoes and reducing the amount of bread I eat helped.

Alias
12-31-2014, 08:47 AM
Ditto what Pete said about medications and dosages being a "balancing act." You want treatment/meds that are proportional to the severity of your disease, so as to get it under control and still minimize side effects. The terms "mild" or "limited" can be misleading to the patient, I think. Sometimes the doctor may be referring to disease that is limited to the upper respiratory system; that in no way means that it is not serious. I don't know for certain, but I think an immunosuppressant, such as methotrexate, is pretty much part of standard care for this illness, so no doubt you will be discussing this with your treatment team soon.

In my case, the first few months after diagnosis were up and down, definitely not a steady curve of improvement. Prednisone really knocked down the inflammation, but I believe I did not start to really get back on my feet until the MTX had started to take effect, which takes a while after one starts using it. Hang in there... things will get better!

MikeG-2012
12-31-2014, 09:38 AM
I'm glad you have a diagnosis and that you feel decent. I agree with everything Pete said in his post, it's all good info to hang on to.

I've just about went through any type of sinus issues that are imaginable with this disease. That said, I am a firm believer that if you are having any sinus issues, start irrigating the crap out of them. The constant moisture is good for the heavy crusting to loosen it up and get it out of the sinuses and airways. My daily routine is 3 liters 1-2 times a day with a WaterPik device. I guess you'd call me an "advanced WaterPikker", and I've received training from my ENT on how to remove the nose tip from the wand and put it inside my nose and sinus cavities. After a year of this, my damaged sinuses, which my ENT thought would never return to normal, has started to grow new lining. It isn't a healthy lining, but there is significant recovery of the lining since my diagnosis almost three years ago.

So, since Pete has done such a great job with his post, if you have any, let the questions fly about the sinus issues!

duffybear
12-31-2014, 11:57 AM
Thanks to everybody for the feedback, which seems to focus on situations that are similar to mine. Upper respiratory is definitely the issue with me (that I know of, so far) - and your comments, Mike, about irrigating are certainly worth thinking about (I have had some very major, sticky, resistant-to-move crusting...how charming). I have been irrigating, but probably have to be more aggressive about this. Re treatments that are proportional to my stage of disease, I notice that one of the experts at a vasculitis conference stated that mild or limited GPA can sometimes be even trickier in terms of treatment than more severe disease - I'm guessing because it's probably clear they need to pull out the big guns in severe cases, but more limited cases may be more subtle, and they may be more hesitant. (?)

Overall, I am relieved that I am doing fairly well mentally with this whole situation. I know it may sound strange, but I'm kind of OK with this. I'm older and I never expected to stay health forever. I no longer have the extreme stress of work (as I've mentioned earlier, my work situation was super-hard), so I have some time to sit with all this. It's not what I would have chosen, but I feel/hope I can live with this. More than anything, it has made me think a lot more about my body. Because I have always worked in very mentally-oriented type jobs, I've tended to treat my body as if it was some kind of hard-driven Honda Civic that I could just flog on and on and on, ferrying my brain around life. Now I can't treat it that way anymore. (I feel kind of sad for my body, actually; I really haven't given it much of a break in life.)

(Well, THAT was quite the little mental ramble, wasn't it? :rolleyes1:)

annekat
12-31-2014, 05:00 PM
Yep, expect the ups and downs, not only from the meds but from the disease itself.... you'll have good days and some not so good just as Pete says. Everyone is affected by stress, but we seem to be even more so, perhaps along with sufferers of other conditions, and a stressful or extra busy day or two can set us back a bit, and we will want to rest, and should do so if at all possible. Here is the link for the Spoon Theory that was mentioned above: But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

Jayne 14
01-03-2015, 08:53 AM
I've never heard of the spoon theory before
Have just read it
It's perfect
Wow
Thanks for sharing that
X


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