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Well this is new!

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13 years 10 months ago #19932 by milly
Well this is new! was created by milly
I decided to get my eyes tested this week, been having a few sight problems since I started taking prednisone last year (no longer taking it) and I now need glasses:huh: The eye doctor also said my eyes are very dry, she said it could be the RA or another auto immune problem :( .

Yesterday when I got up I had a few bruises and a small bruise on the roof of my mouth, I didn't worry about it too much. Today when I got up more bruises and the one in my mouth was about three times bigger so I took myself of to the doctors thinking platelets would be low (he thought the same) so he sent me to the hospital for cbc. I have just got the results and 230k. So that was great news, he is however concerned that the reason for the bruising could be vasculitis, I have never heard of this apparently it is auto immune also. He has decided at this stage just to watch and wait and if any more bruises show up to do further testing.
It is so hard to believe that two years ago there was not a thing wrong and now it seems as though every time I turn around there is another auto immune problem. :ohmy: :angry:
Has anyone ever had vasculitis?

There is no practice run in life.
  • Sandi
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13 years 10 months ago #19935 by Sandi
Replied by Sandi on topic Re: Well this is new!
I've never had it, but I do know people who have. Sorry to hear that, Milly. I hope they are wrong about that. It can be hard to control. Does your Rheumatologist know?
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13 years 10 months ago - 13 years 10 months ago #19936 by
Replied by on topic Re: Well this is new!
Milly I had to look it up on the Mayo Clinic site - this is something my stepmom has, her vasculitis is called Temporal Arteritis or Giant Cell Arteritis. She had an immune disorder which Temporal Arteritis is a side effect of while one has the immune disorder but Temporal Arteritis hit her after her immune disorder ran its course and went away. She is on prednisone for it.

Now is this the doctor you have been thinking of getting rid of or is this a new doctor because you did get rid of other one?

I personally would like more testing to be done to find out if this is really vasculitis - if it is then can get a handle on it.

I'm sorry Milly - hope this is something that goes away!!

[great platelet count!]
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13 years 10 months ago #19942 by milly
Replied by milly on topic Re: Well this is new!
Thanks Sandi and Melinda for your reply. It was Saturday when I went to the Doctors, went to my usual practice (there is about 8 Doctors there and I thought maybe I might get another Doctor not my usual one as there is only one Doctor on call on a Saturday but it was my usual Doctors day) so to answer your question Melinda, yeah I did see the Doctor I was not going to see again.

Anyway I had a cbc and a blood coagulation test and both are fine, the doctor mentioned vasculitis as a possible dx but he did say the bruises that you get because of this are usually very painful, mine are not, they are perfect round black bruises and not at all painful so can I run a thought past you two, could it be that I had a drop in platelets and they had gone back up by the time I had the test done?

I did a little research on vasculitis and it scared the life out of me, surely the powers that be in charge of this universe would not do that to me.:ohmy:

The doctor also told me the my rhumy is leaving and now I have to find a new one (shame I really liked that one) but I intend to discuss the dry eyes (Sjogren's syndrome maybe) and the vasculitis with the new rhumey. Boy oh boy I am starting to feel like an episode of House (tv series)
I am really trying not to stress over this and I am really hoping that it just goes away, or for once I am hoping it is the ITP and I am trying to decide what to do next:unsure:

There is no practice run in life.
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13 years 10 months ago #19944 by Sandi
Replied by Sandi on topic Re: Well this is new!
Milly - I really doubt that your counts dropped that much and went back up that fast. There are other things that it could be though. You'd need a skin biopsy to diagnose it.

I can tell you this: I have stressed over weird things happening to my body quite a few times. I had to learn to stop doing that because a lot of the time, they did go away. My advice to you is to try not to worry until you have to. Its not time yet.
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13 years 10 months ago #19950 by milly
Replied by milly on topic Re: Well this is new!
Sandi, Mayo clinic website says that the test for vasculitis is c-reactive protein and ANA, I have both of these every two months, would you not think that this would show.

I have settled down a bit and not so stressed over this because I don't really think it is too serious, the bruises are on my hands, arm and feet wouldn't they be everywhere if that is what it is.

There is no practice run in life.
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13 years 10 months ago #19952 by Sandi
Replied by Sandi on topic Re: Well this is new!
No, vasculitis can be limited to certain areas or organs of the body. It doesn't have to be everywhere. Having abnormal test results for the ANA and CRP would not mean much without a physical symptom to tie it in; those can both be elevated in someone with an autoimmune disorder and could mean anything or nothing. All they do is indicate inflammation and do not in any way diagnose anything unless combined with other things. It would be odd for you to suddenly develop vasculitis though since you are on an immunosuppressant (and a pretty strong one at that). It is possible, but odd that it would pop up now.

"Patients with vasculitis learn that making the diagnosis is sometimes quite difficult. Many endure numerous doctors’ visits, tests, and hospitalizations before the pieces of the puzzle are assembled. The diagnosis of vasculitis usually requires a biopsy of an involved organ to secure a “tissue diagnosis”. The two reasons for this are:

# ONE: Vasculitis has many MIMICKERS (other diseases that have similar features but require different treatments).

# TWO: The treatments for vasculitis itself involve substantial risk. No physician should prescribe such treatment without making every effort to secure a firm diagnosis.

Blood tests, X–rays, and other studies may suggest the diagnosis of vasculitis, but often the only way to clinch the diagnosis is to biopsy an involved tissue, examine the tissue under the microscope in consultation with a pathologist (ideally one experienced at examining biopsies in vasculitis), and find the pathologic hallmarks of the disease. The trick to diagnosing vasculitis is to figure out the least invasive method of accomplishing this task. If a patient’s symptoms, physical examination, and diagnostic testing suggest involvement of a particular organ, one of the procedures below may be used to confirm (or exclude) the diagnosis of vasculitis:

> Skin Biopsy is one of the least invasive ways of making the diagnosis. A minor procedure performed under local anesthesia. The wound is closed with 1–2 stitches that are removed 7–10 days later."


www.hopkinsvasculitis.org/vasculitis/diagnosing-vasculitis/
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13 years 10 months ago #19955 by Ann
Replied by Ann on topic Re: Well this is new!
If you are on medication it is likely to be a side effect. Mycophenolate gave me capillaritis on my legs and joint pains. They had me down as having Sjogrens at the time but it went away when the drug was stopped. I had been diagnosed with Sicca Syndrome some time before and that still continues but is just that.. dry eyes and skin and nothing more.
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13 years 10 months ago #19960 by milly
Replied by milly on topic Re: Well this is new!
Ann, I am on methotrexate for RA and I thought maybe the cause of the bruises so I asked the Doctor that and he said the methotrexate could cause platelets to drop but does not cause bruises, I really think the dry eyes is just part and parcel of the RA.
It is now two days since the bruises have appeared and no new bruises, but the ones I have are still pretty black.

There is no practice run in life.
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13 years 10 months ago #19961 by Ann
Replied by Ann on topic Re: Well this is new!
Methotrexate..

Skin: Erythematous rashes, pruritus, urticaria, photosensitivity, pigmentary changes, alopecia, ecchymosis, telangiectasia, acne, furunculosis, erythema multiforme, toxic epidermal necrolysis, Stevens-Johnson Syndrome, skin necrosis, skin ulceration, and exfoliative dermatitis.

Other rare side effects include.. vasculitis.

www.drugs.com/sfx/methotrexate-side-effects.html
The following user(s) said Thank You: milly
  • Sandi
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13 years 10 months ago #19968 by Sandi
Replied by Sandi on topic Re: Well this is new!
Ha - good catch Ann. My brain didn't go to the side effects! It's possible, Milly.
13 years 10 months ago #19970 by
Replied by on topic Re: Well this is new!
Yes good catch Ann. My thought was that if vasculitis meth wasn't one of the drugs to take for it [that I saw].

Milly the doctor said:
methotrexate could cause platelets to drop but does not cause bruises
Well when my platelets drop I'll get bruises.

I'm sorry you had to see "him".

No I wouldn't stress over this - however, and this is me, I would want further testing so I would know for sure!! It's easy to test so why not! "Inquiring minds want to know" that's from an old commercial but I like it - and my mind would want to know!

My stepmom had blood tests [think sed rate] and they did a biopsy on the lump at her temple to find out - she did not have bruising but lumps in temporal arteries.
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13 years 10 months ago #20013 by milly
Replied by milly on topic Re: Well this is new!
Thanks Ann
I read the paper that come with the methotrexate and that wasn't mentioned, but anyway most of the bruises are going, I don't think it is vasculitis but I am going to check with the rheumy when I find a new one.
Melinda,
I, like you want to know the inns and outs of everything so I will be following this up and yeah I couldn't believe out of 8 doctors the one I wanted not to see was the one that was on call, but I do live in a not so big city and the options are limited.
I will let you know what happens with this.
Thanks again all of you, don't know what I would do without you.

There is no practice run in life.
  • Sandi
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13 years 10 months ago #20030 by Sandi
Replied by Sandi on topic Re: Well this is new!
That's good news! I hope it keeps going away!
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13 years 10 months ago #20042 by Dean
Replied by Dean on topic Re: Well this is new!
Milly, sorry to hear you are dealing with another issue. What sight problems were you having? I used to have 20/20 but now it is impossible to read anything unless it is 2 feet away from me. I have not been on Prednisone for several years. Two Rituxin treatments with the last being two years ago.
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13 years 10 months ago #20043 by milly
Replied by milly on topic Re: Well this is new!
Hey Dean, things really aren't too bad, it's just sometimes I feel like I should be on an episode of HOUSE it seems everything lately is auto immune.
My sight started to get really blurry when I was on prednisone and I thought it may get better once I was off it, but I haven't been on prednisone now for nearly twelve months and my sight just seem to be getting worse, blurry, double vision and I was getting a lot of head aches so I decided to get it checked. My right eye is a lot worse then my left and when the eye dr covered my left eye I couldn't even read the biggest letters on the eye chart, the dr thinks it may be a combination of being on pred for so long and the RA. She did seem concerned about how dry my eyes were so I will look into this at next rheumy appointment.

I hope you are going ok Dean, maybe a good idea to get your eyes checked if you are having trouble reading.

There is no practice run in life.
  • Sandi
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13 years 10 months ago #20052 by Sandi
Replied by Sandi on topic Re: Well this is new!
I chalk my vision up to age. I have trifocals. I'm sure Prednisone didn't help, but my friends all have the same problem.

Milly - did she give you any eye drops? My eye doctor gives me fantastic lubricating drops.
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13 years 10 months ago #20059 by milly
Replied by milly on topic Re: Well this is new!
Yep gave me drops and I try to use them as much as I can but I have this eye phobia. I hope I never have to have anything done to my eyes, it freaks me out big time. I would rather have a bone marrow biopsy then have anyone near my eyes.

There is no practice run in life.
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13 years 10 months ago #20061 by Dean
Replied by Dean on topic Re: Well this is new!
I kind of think my eye issue might be due to age also. The past few years there were times that I used eyedrops alot as my eyes were really red for several days. Not sure if that could have caused issues or not. Probably should have had it checked. Bone marrow biopsy is one of the worst things I have had done.
Good luck Milly.
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13 years 9 months ago #20164 by tlmons
Replied by tlmons on topic Re: Well this is new!
Milly!
I hope your bruises are better by now. i had a feeling....

7 months after I was off prednisone, I finally got my eyes checked. I had waited for the blurry vision to get better but it just got worse, especially after being at the computer for a while. I found out my prescription had doubled! I think prednisone had something to do with it.

I am anxious to hear how you are doing. I think I need to visit pdsa more often.
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13 years 9 months ago #20167 by Sandi
Replied by Sandi on topic Re: Well this is new!
Milly - you certainly wouldn't want to hear about the eye surgery I had once! Needles and strings in the eye balls! Yes, the BMB was easier than that.
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13 years 9 months ago #20178 by milly
Replied by milly on topic Re: Well this is new!
Strings..... you had strings in your eyes OMG and needles, ok so I am now going to blame you for my nightmares tonight. I don't know why it is that eyes just really freak me out. My daughter has recently started a nursing course at uni and her first lab day she had to cut up a sheep's eye, well that had me running to the bathroom.

There is no practice run in life.
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13 years 9 months ago #20179 by milly
Replied by milly on topic Re: Well this is new!
Hey Tlmons,
Great see you back, maybe an update for everyone else so they know how well you are doing.

I am doing ok, got another couple bruises and I am going to check it out further, I really think it has something to do with the methotrexate.

There is no practice run in life.
13 years 9 months ago #20181 by
Replied by on topic Re: Well this is new!
Hi Milly,
I know you said you'd made a remedy from your Methotrexate at least one time before. You may want to try that again, also do the same for the Prednisone. You might find it will help with your eyes. Make a remedy up, then you can take a sip of it about an hour or two after getting your shot. (Or, sooner than that if you're having an obvious reaction to it.

Remember the little 3 year old with the RA I mentioned in another thread? Since he's started homeopathic treatment, he has no swelling and is nearly pain free, now. One more good checkup, and they are going to reduce his Meth, or may even discontinue it. They have been able to increase the time of his shot to 10 days between, instead of 5 or 6 days.

He broke his leg quite severely, though (due to the Pred he'd taken), and because we had to use some different remedies to treat that, his progress has been slowed. But, I spoke with his mom tonight. She said that the other night he was complaining and crying over his stomach pains, and could not be consoled. She finally thought to make up a remedy from the Methotrexate, to see if it could really do anything. She was pretty amazed that within 1 minute of taking it, he said his stomach had quit hurting. Normally the stomach pains would go on for days, so she was excited to see it work so rapidly.

You might want to give it a try again.
April
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13 years 9 months ago #20185 by tlmons
Replied by tlmons on topic Re: Well this is new!
You know Milly,
A violent reaction to ciproflaxicin gave me itp. It wasn't mentioned as a side effect given by my pharmacy. When I went online, I found it. My daughter, who is a vet tech, says that itp is common in dogs if given cipro! Imagine that. I hope you find a solution.

And, yes, I had my platelets checked last week. (every 3 months) I was up to 281,000. A far cry from 0-5 last year. Actually, today is the anniversary of when I was started on that fateful course of cipro.... :S

Also, Sandi, your experience sounds crazy. Its amazing what our bodies can put up with.
  • Sandi
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13 years 9 months ago #20229 by Sandi
Replied by Sandi on topic Re: Well this is new!
Takes a lickin' and keeps on tickin'!