Little flare??

[Pete]

Things have been going pretty well for me since getting off pred two months ago. However, I woke up this morning with achy hips and knees, extreme fatigue, and loss of appetite. Was able to check for blood in urine, and that was negative. I have an appointment with Dr Villa Forte tomorrow, but talked to her today. She suggested 20 mg of pred and will probably give me an extra thorough exam tomorrow. Hope we can nip this in the bud...

[pberggren1]

So she wants you to take 20mg for one day? Why?

At least you are seeing her tomorrow. Keep us posted.

[Pete]

Hi Phil,

She wants to get a head start on knocking the inflammation down. We'll see where tomorrow takes me.

Thanks for the support.

[Dirty Don]

Things have been going pretty well for me since getting off pred two months ago. However, I woke up this morning with achy hips and knees, extreme fatigue, and loss of appetite.

Could it be age? Smiles....

[annekat]

I hope it's not much of a flare, Pete... sounds like you are catching it early. When I flared last winter it took awhile for it to develop to where I knew it was a flare. With the night sweats and blot clots in nose, I knew. I knocked it out with an increase in MTX and pred, and still am not back to my former pred level quite yet. But I have no doubt that you and Dr. Villa Forte can nip this in the bud. Good luck!

[annekat]

Could it be age? Smiles.... Shoot, I thought of the age thing, too, when I read about the achy joints and fatigue. How does one tell the difference sometimes? Lately I have some fleeting achiness in my fingers and elbows, but I'm attributing it to pottery making. I think if it was Wegs it would be a little less fleeting than it is. This evening I'm a little fatigued, but I think it is because I drank too much COFFEE earlier on! On a lighter note, when I'm doing well, I generally WANT coffee. And tend to drink more than necessary, which can later drag me down. When I'm flaring, I do not want coffee and opt for black tea instead. So I guess I am over my flare!

[marylz]

Crossing my fingers!

[annekat]

Crossing my fingers! Me, too, and BTW, the only reason I said anything about coffee is that I was replying to Don, who has a thing for it...... Most of all, I want Pete to get over this possible flare before it even gets off the ground!

[Alysia]

good luck pete !

[Pete]

Well, another wrinkle this morning that leads me to believe it might be something else. Have GI symptoms this morning, which will prevent me from going to Cleveland Clinic today (5 hour round trip). The wegs symptoms have pretty much died down. No aches and energy level seems better.

Don, I don't think that age has anything to do with it (grin).

As for coffee, I drink a couple of cups is decaf with the newspaper each morning and that's all.

At any rate, I'm optimistic this will be over soon.

[Geoff]

Best of luck Pete, hope it settles down soon.

Its interseting how a 'side issue' can stir the Wegs dog and then hopefully just as quickly settle it down.

A good friend of mine (who is off pred) takes between 20 and 30mg a day for 4 to 5 days and then quickly comes back down to zero to snuff out any flare if he feels his classic syptoms coming on.

It works for him, and as we know, one hat doesnt fit all with this illness.

[pwc51]

HI Pete - I flared recently. As ever, it took a while to be convinced it was a flare - my Rheumy was convinced it was something else (not quite sure what) as the initial symptoms were sufficiently different from previous events as to cast doubt. After a while a number of other symptoms started appearing and, to me, there was no doubt! I was put back onto 40mg Pred (from zero) and immediately felt better. All symptoms virtually disappeared almost immediately. I have since had two further RTX infusions - can't say I noticed any difference from simply using pred! The pred is now down to 10mg and they want me to stay there for the next 3 months.

I will update further if there are developments.

[annekat]

Oh, Pete, I'm sorry you have other issues cropping up and can't make it to the Clinic. But I hope that indeed means it is something other than a Wegs flare and it will soon pass.

As for coffee, I'm not sure that decaf counts! Don?

[annekat]

pcw51, that is similar to what happened with my recent flare. I thought I was having one but my doctor didn't! I had recently had a cold and was still recovering from the effects of that. It took a worsening of symptoms to convince him I was having a flare, which was borne out by the blood test. Yes, an increase in pred can work wonders! My MTX was increased, too, which I think was too low to begin with. No RTX experience here. I'm trying to get my pred down now from 12.5 back to 10mg., where it was before the flare. I should be able to do it, but if any stressful situation comes up, it makes it difficult! I'm working on it.

[Alysia]

Have GI symptoms this morning.
what is GI ?

[Dirty Don]

Alysia, in Pete's case, GI means gastro-intestinal. Anne, coffee is coffee...never good for one, but caffeine can affect some adversely more than others...as I sip mine now! Pete, hope you feel better soon, maybe you just have a case of 'summer' flu? Sheesh...anyway, best to you bud...shake it off quickly.

[Alysia]

Alysia, in Pete's case, GI means gastro-intestinal.
Pete, hope you feel better soon, maybe you just have a case of 'summer' flu?

sometimes, when it is not clear if the state is flaring or some "flu" (germs, virus), Im wondering if elevating the pred is the right step, because it may cause the "flu" (if this is the case) became worse. isnt it ? I thought that the immune system is weaker when pred is more high, so it can cause the germs/ virus sustains more. what do you think ?

[annekat]

sometimes, when it is not clear if the state is flaring or some "flu" (germs, virus), Im wondering if elevating the pred is the right step, because it may cause the "flu" (if this is the case) became worse. isnt it ? I thought that the immune system is weaker when pred is more high, so it can cause the germs/ virus sustains more. what do you think ? I would agree that it wouldn't be too wise to increase the pred if you think what you have might be the flu rather than a flare, for the reasons you say. I think it would be better to let the "flu" or cold, or whatever, take its course and if it goes away on its own, then you know it wasn't a flare. In my case, I had a cold, which wasn't bad and pretty much went away, but I think it may have triggered the flare that built up over the next few weeks. By the time my pred and MTX were increased, it had progressed to some classic Wegs symptoms such as night sweats and nasal blood clots, and the blood test showed greatly increased inflammation. It can be tricky, though, I'm sure, with other time frames and types of symptoms, and especially in cases where one becomes suddenly very sick and must decide what to do.

[Pete]

Feeling decent now - just tired. Waiting for wegs doc to call about pred. Hoping that a one time dose of 20 mg won't hurt anything.

[annekat]

Feeling decent now - just tired. Waiting for wegs doc to call about pred. Hoping that a one time dose of 20 mg won't hurt anything. I'm glad you are feeling better. My sense is that a one time dose of 20mg. pred would NOT hurt anything. And if she has you continue that way for a bit, no big deal, either! Understandably, though, you'd want to taper back down pretty soon as long as things are OK.

[pberggren1]

20mg for one day will not do much harm at all.

[Pete]

That's what my wegs doc said. Feeling much better tonight. Hope to be back to normal in a day or two.

Thanks for the support and advice.

[pberggren1]

Are you still going to see Dr. VF?

[Pete]

Phil,

Rescheduled appt for late June. All is well here.

[HopeinTN]

So far so good. I hope you continue to get better!

[mishb]

I'm glad you are starting to feel better Pete.

So does that mean that you hips etc are no longer hurting? It may just be to increase in pred, reducing the pain.
It would be interesting to see what they are like when you reduce the pred again.
........hopefully everything is better and you just picked up a bug of some sort.

Take care

[Pete]

Here we go again! I've been having more pronounced fatigue after taking my weekly dose of mtx. Also having more pain in feet and hips. I unilaterally upped my pred from 2 to 5 mg/day and immediately felt better. I e-mailed my experience to Dr Villa Forte. She believes it's the start of a flare, so she's recommending a second round of rtx. I'll stop mtx when I get my first infusion. Hoping to get these done yet this month.

I'm still able to be active. I got back into walking this week at 3 miles four times. Going again later today. I've also been working hard in the yard - put in a new bed yesterday (amazed at the number of rocks and roots in my yard). Planning to finally get the golf clubs out this week! (We've had a lot of rainy days here over past month or so.)

Life is still good...

[annekat]

Sorry to hear that Pete. Best to nip it in the bud before it turns into a big flare. But you are doing pretty well to be doing all that walking and yardwork while fighting that off. I tend to have my flares in the winter, but didn't this year. But I have had more allergy issues this year and did have a vertigo spell the other day while out in public. Yikes. I don't consider that anything flare-like, though I'm mystified by it. My blood numbers have all been good. I wonder how yours look with this little flare trying to get a foothold. Best of luck, I know you can whup it.

[Alysia]

I am sorry Pete. Good that you catch it as early as possible. I suspect that for each one of us there is the specific dose of pred that under it we got flaring. As for rtx, are you getting it only in flares or every 6 months ? I get it every 6 months and I guess it keeps me from flaring. But I am not on mtx which should prevent you from flaring.
Nice to see old posts of my sweet Phil. He was always here for everyone.
And my first posts at the forum... still learning the language.
take care, dont overdo, get well soon. Please update us.

[Pete]

Thanks, Alysia. My rheumy only uses rtx for flares. It's been over 18 months since my last one. It looks like my minimum pred dose is going to be 4 mg.

So far, so good. Still leading a normal life...

[Alysia]

For your beautiful grandchildren you have be well... and you are.

[Debbie C]

Pete,do you think you may be overdueing it with the yard and walking .. maybe that's why your hips and feet hurt ?????
I know all this rain we've had has been making me take an afternoon nap on some days, hope its nothing with you. Im going to CC on Wed. We all need to see if we can get appts the same day and go do lunch. Hope u feel better

[Pete]

Pete,do you think you may be overdueing it with the yard and walking .. maybe that's why your hips and feet hurt ?????
I know all this rain we've had has been making me take an afternoon nap on some days, hope its nothing with you. Im going to CC on Wed. We all need to see if we can get appts the same day and go do lunch. Hope u feel better

I don't think I'm overdoing it with the walking. I walk at a brisk pace, but I don't push. When I'm pushing, I feel like if I try to go faster, I'll be running. As for the yard work, maybe a bit, but I only work about 40 minutes out of an hour. It was easier this time because the soil was softer.

I have to set up my next appointment at Cleveland Clinic for October soon. Anybody already scheduled then?

[Psyborg]

Just coming out of a Flare myself Pete. I'm not on treatment with only RTX and Prednisone...I guess that's a new thing they are trying. Hope things get under control quick for you.

[Pete]

Just coming out of a Flare myself Pete. I'm not on treatment with only RTX and Prednisone...I guess that's a new thing they are trying. Hope things get under control quick for you.

Thanks, Bob. I wouldn't mind getting off mtx as I don't like the fatigue that comes during the couple of days after I take it.

Just started meshing the Cleveland Clinic and Ohio State medical bureaucracies. The nephrologist on the OSU team that diagnosed me oversaw my last rtx treatments, so I'm trying to connect him and Dr VF. Hope to get treated yet this month...

You OK otherwise?

[Psyborg]

Had some elevated bloodwork this last infusion. Lipase was elevated...they ordered that because I complained of some stomach discomfort after my second infusion. No idea what is going on with that yet...sounds like it might be pancreatitis...waiting to see a doc about it.

[Pete]

Here's hoping the stomach upset isn't symptomatic of something nasty...

[Jaha]

Bob,
I'm sorry that you are having stomach issues now. Did they refer you to someone there at CC for your stomach? Dr. VF sent me to a Dr. Carole Burke that seemed to be on top on things, she did an endoscopy the same day she seen me. I wish you all the best with getting to the bottom of this problem. Hope you feel well soon.

[Psyborg]

They did, but I had an appointment scheduled the same day at OSU in columbus, so I'm going with the OSU appointment. I've had pretty good luck with my OSU doctors for (other than my ER visit lol)

[Pete]

Saw the nephrologist at OSU today. He had just gotten Dr Villa Forte's thoughts on my treatment going forward. Coming up, four rounds of rtx at 375 mg/sq meter at weekly intervals. Once the rtx starts, mtx goes away for a long time, I hope.

Symptoms have improved a little since bumping pred up to 5 mg/day. Doing well otherwise. Hope to play golf later this week if it ever stops raining (but hey, the flowers are generally going crazy)...

[Jaha]

Pete,
Wishing you all the best with your RTX txs.

[Pete]

The infusion center is ready when the insurance company is. Hoping to get first treatment next week.

Played nine holes of golf yesterday. It was my first time out this year, and it was awful. It would have been embarrassing if I wasn't playing a course frequented by beginners...

Off to Franklin Park Conservatory with the grandkids this morning. They have a "big bugs" exhibit (large sculptures of bugs) that we think they'll enjoy.