Re: Please help! Mom has unidentifiable arthritis!

[Guest guest]

We are in Houston, TX.

She is seeing a rheumatologist, who says it is one of the worst cases

she has seen. She cannot identify the type, it is NOT RA and probably

not Lupus. The doctor has tried all kinds of treatment and it is

getting worse. She suggested for my mom to get a second opinion. My

mom is 52 years old.

My moms doc thought it was autoimmune originally, because she has a

couple of other autoimmune problems. Now she is thinking it is

aggressive inflammatory osteoarthritis?

I am also starting to have arthritis in the joints of my hands, and

toes. Sometimes it is bad in my knees and hips. It was worse before I

got pregnant, now my son is four months it is getting bad again. I am

29, it started when I was 27 and is progressively getting worse. I do

not have health insurance so I cannot receive treatment.

" OM Shanti " <nk_laurie@...>

[Guest guest]

<< My moms doc thought it was autoimmune originally, because she has a couple of

other autoimmune problems. Now she is thinking it is aggressive inflammatory

osteoarthritis?>>

Be careful with accepting the " inflammatory osteoarthritis " diagnosis.

I was told for years (when I was in my 30's!) that I " just "

had " osteoarthritis. " It wasn't until I was in my 40's that I was

finally referred to a superb rheumatologist at Northwestern University

who, after a complete and thorough head to toe exam, diagnosed me

with " spondyloarthropathy, likely due to psoriatic arthritis. " I was

one of the folks who, other than mild dandruff, didn't really exhibit

any signs of psoriasis prior to the PA diagnosis; the rheumatologist

told me that this can happen up to 20% of the time. He immediately

began aggressive treatment with Methotrexate, which did help in that I

was able to get off short term medical disability leave and return to

work full-time, but unfortunately it didn't reverse the joint damage

that had already occurred; ultimately, I ended up having a hip

replacement in 2006 at the age of 49. My feet and sacroiliac area are

also damaged.

As a general rule, osteoarthritis is a condition of folks age 50 and

over. While it's possible your mom might have osteoarthritis along with

an auto-immune arthritis, with you being in your 20's and already

suffering, I would strongly urge further investigation into the various

auto-immune conditions, such as PA, Sjogrens, MCTD, etc.

The problem is that much of the damage from psoriatic arthritis doesn't

always show up on regular Xrays. Ultrasounds, MRI's, and CT scans are

better to diagnose the extent of inflammatory damage, according to my

rhuematologist. Also, PA doesn't really show up on lab tests either,

unless you're one of the population that bears the HLA-B27 genetic

marker, although occasionally other inflammatory markers such as the C-

Reactive Protein and Sed Rate may be elevated. It really takes an

expert rheumatologist to diagnose PA, based on clinical examination

evidence, as my doc did me. When he diagnosed me, my RF was negative,

and my ANA was negative, but my sed rate, WBC, neutrophil count, and C-

Reactive Protein levels were among the highest he'd ever seen, he said.

" dreimutter1957 " <dreimutter1957@...>

[Guest guest]

What is spondyloarthropathy?

Also, What is the main difference between treatment for RA and PA?

Because my moms doc has her diagnosed with RA but the treatment is not

working. She KNOWS my mom doesn't have RA but had to write a diagnosis

for her insurance to pay for all of the IV's. She doesn't know WHAT my

mom has. She is negative for RA. Negative for Lupus. And sed rate is

normal!! But her joints are being destroyed, it is obvious that she

has arthritis.

Regarding autoimmune diseases... both mom and I have hashimotos

thyroid disease & endometriosis. My mom also has vitiligo (loss of

skin pigmentation) and I also have PCOS. It seemed obvious to me (in

the beginning) that my mother must have RA b/c she has " symmetric

destruction of joints " aka red knuckles, fingers, toes, etc. But her

doctor has been aggressively treating her for RA with all kinds of

crazy IV drugs and NOTHING seems to be working. In fact, her arthritis

has gotten significantly WORSE since she has been on all of these meds.

I also have symmetry where my joints are paining, but my right hand

(thumb and index finger) hurt the worst. Probably because I use them a

lot... my toes and feet, balls of feet hurt really bad. Ankles. Back.

ETC.

My joints are starting to hurt really bad, kind of like one of my

fingers used to hurt occasionally after it was broken. In fact I was

wondering if I must have broken or sprained something because my hands

have been hurting so much. It has gotten significantly worse since I

had my baby.

Before I got pregnant EVERYTHING HURT but my joints were just really

stiff. If I laid in one position for a while, my hips & knees would

hurt and it would be hard for me to get up (esp during sex with my

husband-- sorry for TMI). It hurt so bad, which is really odd for a 27

year old don't you think?? Now I am 29 and have given birth, and my

joints are totally screwed like, 10 X worse than before.

Thanks for sharing.

[Guest guest]

,

From WebMD: Spondyloarthropathies are a family of long-term (chronic)

diseases of joints. ... They include ankylosing spondylitis, Reiter's

syndrome (reactive arthritis), psoriatic arthritis, and joint

problems associated with inflammatory bowel disease (enteropathic

arthritis. (So, our PA is considered spondyloarthropathy.)

The treatments for RA and PA are virtually the same. New drugs tend

to get approved first for RA, because the companies can sell the most

that way because RA is more common than PA. Then, they start testing

them for PA and other auto-immune diseases later. So far, just about

everything that works for RA and has been tested for PA has been

approved for both. This is why it's not so important to get the

right diagnosis - the treatment is the same.

Just because the joint pain is symmetric that doesn't guarantee it's

RA. PA can be either symmetric or not.

Not every drug works for every person. It could be that your mom

just hasn't yet tried the drug or combo that is going to be the

almost-magic-bullet for her. In my case, I had to take Humira at

twice the normal dosage before I got good relief.

Have you seen a rheumatologist yourself? Since your mom's arthritis

is very aggressive, I'm worried about you, too. Please take care of

yourself! The drugs can help prevent the kind of joint destruction

your mom is experiencing. If you can start on one of the biologicals

now, you may never have to get so bad. You are about the same age as

my daughters and I would advise them the same if they should begin to

have any joint pain.

Take care and keep us posted on both your mom and you,

sherry z

[Guest guest]

My rheumatologist doesn't really know which type of arthritis I have.

He finally chose psoriatic because my brother has it and it runs in

families more than RA. I think I read somewhere that there was a

high concordance in identical twins with PA. My labs were a little

different from your moms, my sed rate and CRP were elevated and I

also have a positive ANA, but my white cell count was normal.

From what my rheumy said, the treatments for RA and PA are pretty

much identical especially if you don't have to deal with psoriasis

like me. When you say that your mom has been on all kinds of crazy

IV drugs. What drugs has she tried? I think the best treatment plan

for both RA and PA is to try different drugs and eventually get on

one of the biological agents (Remicade, Humira, Enbrel) with

methotrexate. Has she tried any of those?

" Sheridan " <sksherid@...>

[Guest guest]

Walt, did you mean to say " PA " affects the tendons as well as the

joints? PA definitely affects the tendons and frequently causes

tendinitis. It can affect cartilage as well.

regards,

sherry z

[Guest guest]

Walt, PA can also effect tendons and other soft tissue. I've been

lucky enough to have that problem with my PA. Tendinitis in my

elbow, carpal tunnel in my wrists, bursitis in my hips, fasciitis

in my feet. Overall disease control has been the best

treatment for all of those things.

Angie

[Guest guest]

The meds my mom is taking are:

Orencia

Methyltrexate

Sulfadine

and now

Doxycycline

They do not seem to be helping. But her doc says maybe the arthritis

would be much worse if she weren't taking them. She is still working

as a nurse in Neo Natal ICU. I don't know how she does it, but she is

still functioning. She is really worried that she will not be able to

work if her joints become too damaged. She is still taking care of two

of my sisters, twins age 13, and she is worried if she has to go on

disability she will not be able to care for them. My father died a

while back...

I gave her the link for this group maybe she will join soon.

[Guest guest]

Unfortunately, many cases of arthritis are diagnosed by exclusion of

other diseases so it's not all that uncommon to have an

unidentifiable arthritis. In my case, I have NEVER had an abnormal

lab value for any autoimmune test, including SED rate, ANA,

rheumatoid factor....this was true even when I had massive swelling

in almost every joint. So the lab values are not always that helpful.

How can you be so sure that it is not RA? There is such a thing as

sero-negative RA, which can be very aggressive. Also, several of the

drugs your that your mom in on can take quite some time to kick it.

Often more than 8 weeks for sulfasalazine and mtx, and as long as 4

months for orencia. Has she been on them for long? Does her pain

improve when she is on steroids?

My rheumatologist and I have finally accepted that for now I don't

have a firm diagnosis, and just focused on finding a treatment that

worked. Fortunately, a lot of these drugs are approved for treating

multiple types of auto-immune issues, so hopefully your mom can find

some relief.

Good luck to you both. It is a long and stressful road in the

beginning trying to navigate the maze of pain and uncertainty, but

things will settle down and you'll get the hang of it!

Jill