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KellyD
06-10-2016, 09:30 AM
Hello. I was diagnosed in March 2016 with rheumatoid arthritis as well as Wegeners. My Rheumatologist put me on methotrexate and after 3 months the side effects were so severe I asked to try something else. I had my first rituxan infusion 2 weeks ago and will start my second one tomorrow. I chose not to take the predisone longer than 2 weeks because of the side effects. My doctor doesn't seem to give me answers and I am so physically mentally spiritually and emotionally exhausted I don't know which way to turn. Does anyone have both WG and RA? My main concern with side effects of both meds I have tried is the severe fatigue and muscle weakness. I'm 43 and have 2 younger children to care for and I am the sole provider. I believe the WG was caught early but I want to try and prevent my condition from worsening. Any advice would be so greatly appreciated. Thanks

mishb
06-10-2016, 04:59 PM
Hi Kelly

At 43 I also was diagnosed with RA and then at 45 I was diagnosed with WG. I'm now 51 and doing well.

Unfortunately if you want to try and prevent your condition from worsening, then you need to remain on the prednisone or some other steroid anti inflammatory.
Prednisone was my life saver.
You will probably not feel the effects of the rituxan for another month and this is where the pred helps out because it works almost straight away.

As for pred, fat puffy cheeks, squinty eyes, pregnant looking stomach, massive stretch marks - these are all part and parcel for most people I'm afraid, but it does get better and the weight gain nearly vanishes, as you reduce to lower amounts.
What side effects were you getting from the pred? Have you tried Mobic tablets? They didn't work at all for me, but some people I know swear by them.

Seriously, if you want to get rid of those joint pains, you really need to take what was prescribed. I really don't know how you are doing it otherwise, you must be way stronger than me.

What are your symptoms for the WG diagnosis?

renidrag
06-10-2016, 09:15 PM
With WG we can't pick and choose the meds we want and don't want. Prednisone is a life saver although the side effects are not good. Get through the beginning and then you can start to lessen the doses and get off completely.

KellyD
06-10-2016, 10:47 PM
Thank you for responding ��
I have tried the mobid as well as celebrex and naproxen without luck. The only pain med my physician will give me is ultram. I work at a cancer center and there is a lot of walking involved. Some days I feel like I can't continue working as the pain is tremendous. As for the pred side effects it's the weight gain and mood swings as well bone loss that I worry about. I have had multiple cortisone shots in the past 2 years for other health related problems and I have been on predisone off and on with my sinus issues. My only symptoms with the WG so far are bloody nose, crusting, phlem, face pain. I literally feel like I have had the most horrible sinus infection that won't go away since October. I know I need to get on a good regimen of meds, I just don't know what that will be. My physician doesn't really explain this to me.

blu4runner
06-10-2016, 11:20 PM
I would seek out a doctor who is familiar with WG I was treated by my first doctor for 18 months without much improvement. I then changed doctors and have a WG specialist I did rituximab for 2 years and prednisone. I had my last prednisone and rituximab April 15 and don't take any WG drugs now. The vasculitis foundation has a list of doctors that are specialist with our disorder. Best wishes for you!!

KellyD
06-11-2016, 12:06 AM
Sadly my Rheumatoligst specializes in WG. How often were your infusions and how long were you on the predisone and what milligram? I'm going to talk to my doctor next month and get a regimen going.

MaxD
06-11-2016, 01:41 AM
You need to get back on prednisone asap. When I was diagnosed, I had 75mg daily for a month, reduced to 60mg after the first infusion and by 10 with each of the next 3. The taper continued for another 6 months - so I was on prednisone for 9 months in all. Almost everyone here has gone through a similar regimen. Prednisone is a life saver - it reduces inflammation immediately. Yes, it does have unpleasant side effects and the last stages of the taper are tough .... but you will get through it. I remember the joint pains when I was diagnosed and it was hell. So I sympathize with what you must be going through. I could barely walk before diagnosis and within two days on prednisone I went for a long walk in Liberty park and felt my life coming back.

I can't imagine a rheumatologist not insisting on prednisone. Maybe you might wish to consult with a vasculitis specialty center, and have them coordinate your care with your doc.

blu4runner
06-11-2016, 06:44 AM
I was on prednisone from 4/2012 through 4/2015 started at 80mg per day and before i stopped was at 2.5mg day. I started on Methotrexate for 18 months but the rituximab did so much better for me Infusions started Aug 2013 once a week for 4 weeks and then once every 3 months until April 2015. It was part of a clinical trial at UPenn with Dr Merkel

drz
06-13-2016, 01:51 PM
You need a Doctor with experience with Wegs, one that will advise you, and then you need to listen to the Doctor and trust their advice. That means taking the meds and following the treatment plan. If it is not working a good Doctor will work with you to find a better one.

Pete
06-13-2016, 02:53 PM
Sadly my Rheumatoligst specializes in WG. How often were your infusions and how long were you on the predisone and what milligram? I'm going to talk to my doctor next month and get a regimen going.

Ask your doc how many wegs patients he is treating. If it's a two-digit number, he's not a wegs specialist.

Pete
06-13-2016, 04:42 PM
Fwiw, here is my treatment regimen since dx:

Immunosuppressants:
1/11-7/12: cyclophosphamide 150 mg/day (was on it about a year too long)
7/12-8/15: methotrexate 15-25 mg/wk
10/13: rituxin 4 x 750 mg infusions a week apart
8/15: rituxin 2 x 1 gram infusions a week apart

Anti-inflammatory:
1/11-10/12: prednisone 60 mg/day
10/12-8/13: taper prednisone to zero
10/13-1/14: prednisone 60 mg/day
1/14-4/14: taper prednisone to 3 mg/day. Began having symptoms.
4/14-present: prednisone 5 mg/day

Antibiotic:
1/11-present: Bactrim DS on M-W-F

I am in remission. I am also going to have a 1 gram infusion of rituxin in August for maintenance.

annekat
06-14-2016, 06:40 AM
Kelly, if you are new to sustained high doses of pred, it is understandable that the side effects might bother you. But it will be tapered and these effects will become less. Weight gain is temporary for many or most people, as is the puffy face. Bone loss happens gradually over a period of time, and by sticking with the pred regimen, the benefits may improve you enough that you can get to a much lower dose or get off it completely, and avoid significant bone loss. At the lower doses, many of us feel much better with pred than without it, and if joint pains are creeping in, or signs of flaring, such as night sweats, we make need to increase the dose a little. As others say above, you are really better off in the long run with the pred that is prescribed than without it. And I agree you should be seeing the best WG specialist you can, there are some listed on the Vasculitis Foundation Website who may consult with your doc for free if you can't travel to see them, or who may recommend a doc near your home. Good luck, and keep us posted!

CT01
11-25-2016, 04:41 AM
I would seek out a doctor who is familiar with WG I was treated by my first doctor for 18 months without much improvement. I then changed doctors and have a WG specialist I did rituximab for 2 years and prednisone. I had my last prednisone and rituximab April 15 and don't take any WG drugs now. The vasculitis foundation has a list of doctors that are specialist with our disorder. Best wishes for you!!



Hi blu4runner, I have joined this forum to research on Wegener's to help a friend. A very dear friend of mine has been diagnosed with WG 5 months ago & has not come into remission yet. He is in the stage where doctors are tapering down the medicine. I would like to help him with attain better quality of daily life. My friend is suffering from daily headaches..I believe this is side effect of Prednisone. Did you suffer from headaches during WG treatment? Could yo suggest me how best would it be to reduce these headaches, any essential oils or any thing that might help...I will be very thankful for your help.Thanks a lot...CT01

blu4runner
11-26-2016, 01:47 AM
I was fortunate and did not have headaches as a symptom for me Sorry not sure what would be best for it

Pete
11-26-2016, 05:35 AM
Hi CT,

Just curious about your friend's drug taper(s). Prednisone should be tapered very gradually once belle about 30 mg/day. I tapered at 5 mg every two weeks down to 20. From 20, I dropped 2.5 mg every two weeks until I got to 10. From 10, I dropped 1mg every two weeks down to zero.

Your friend may want to return to the lowest dose where there were no symptoms and then resume the pred taper again at a slower rate. This should be done after a consultation with the doctor. The consultation should include how your friend has felt since last visit, symptoms and intensity, questions regarding new meds and likely side effects, and what do if there's no improvement (or a relapse).

A taper on other meds might be ok if labs show improvement. This is definitely a conversation for the doctor.

CT01
11-27-2016, 05:29 AM
Hi CT,

Just curious about your friend's drug taper(s). Prednisone should be tapered very gradually once belle about 30 mg/day. I tapered at 5 mg every two weeks down to 20. From 20, I dropped 2.5 mg every two weeks until I got to 10. From 10, I dropped 1mg every two weeks down to zero.

Your friend may want to return to the lowest dose where there were no symptoms and then resume the pred taper again at a slower rate. This should be done after a consultation with the doctor. The consultation should include how your friend has felt since last visit, symptoms and intensity, questions regarding new meds and likely side effects, and what do if there's no improvement (or a relapse).

A taper on other meds might be ok if labs show improvement. This is definitely a conversation for the doctor.

Hello Pete,

Thankyou for sharing ho you had tapered down the medicine. This helps to get a perspective on the taper phase. My friend is in taper down phase in consultation with his doctors.

I want to support him through my research on WG....He might be looking at it only through what his doctors tell him (who actually cannot say anything with certainty) or what he reads off google, which says 60% cases relapse within 2-5 years. Please help me find some remedy for his headaches. As you have suggested in separate post I will try to ask him if any Doctors mentioned n Vasculitis Foundation is on board with his treatment.