Aa
MS and SS possible ?
I am a 42 yr. female diagnosed with primary sjogrens for over 11 years now. Currently on IV infusion therapy monthly as well as other "standard" maint ss meds. Recently had brain MRI for memory and facial paralysis. Found non specific white matter changes in peri ventricular region on both sides of brain. Several more focal 4-5 mm in several locations. CSF came back with very high Albumin IgG levels, multiple oligo. Bands high synth rate. Keep reading MS is questionable diagnosis for SS patients. Is that true? Don't see neuro for another week..
Sorry for your rotten diagnosis. I'm glad your rheumy is keeping his eyes open re: meds.
Your post regarding post diagnosis feelings is so familiar with me. People were treating me differently just after I told them what was happening. But as time went by (I'm 4 1/2 years after diagnosis), things seemed to settle down when friends and family members saw what I was capable of doing, and what I wasn't. I've also learned that people can't read my mind, and I have to ask for what I need. I don't feel helpless, in this regard, quite the opposite.
Give it time, and save your energy for managing your diseases. You, and your family and friends will slowly adjust.
Big Hugs!
Your post regarding post diagnosis feelings is so familiar with me. People were treating me differently just after I told them what was happening. But as time went by (I'm 4 1/2 years after diagnosis), things seemed to settle down when friends and family members saw what I was capable of doing, and what I wasn't. I've also learned that people can't read my mind, and I have to ask for what I need. I don't feel helpless, in this regard, quite the opposite.
Give it time, and save your energy for managing your diseases. You, and your family and friends will slowly adjust.
Big Hugs!
I think your Rheumatologist sounds like he dedicated in giving it a go & monitoring you closely. That's great! I have found that most Rheumy's have a much better knowledge of the drugs & possible interactions as well as keeping a close eye on their patients. I guess it is because they deal with the majority of immunosuppressive drugs for the array of autoimmune conditions they deal with day to day.
I wish you the best on starting the Copaxone & hope you don't have any side effects.
Are you feeling any better about the situation now or are you still worried? It's a hard time for you I know but remember there are many people on this forum who have more than one chronic condition & they will probably have lots of advice for you....when your ready.
I hope you are managing to negotiate family members a bit better. It's hard when people always say the wrong thing. It's hard for people to get it unless they have been there. Keep in touch.
Take care of yourself.....Karry.
I wish you the best on starting the Copaxone & hope you don't have any side effects.
Are you feeling any better about the situation now or are you still worried? It's a hard time for you I know but remember there are many people on this forum who have more than one chronic condition & they will probably have lots of advice for you....when your ready.
I hope you are managing to negotiate family members a bit better. It's hard when people always say the wrong thing. It's hard for people to get it unless they have been there. Keep in touch.
Take care of yourself.....Karry.
Hi Karry -
I want to make sure I understand. Your neuro said you do not have Sjogren's, but instead you have MS? Or do you have both?
It can be hard to find the right MS treatment. Harder still when it has to work with your SS meds. Your neuro sounds like a good one. He was willing to check the Benlysta and Copaxone will play nicely together and will monitor you closely.
If Copaxone works to keep you MS in check you'll be ahead of the game. Rituximab is kind of a "When all else fails" treatment.
Kyle
I want to make sure I understand. Your neuro said you do not have Sjogren's, but instead you have MS? Or do you have both?
It can be hard to find the right MS treatment. Harder still when it has to work with your SS meds. Your neuro sounds like a good one. He was willing to check the Benlysta and Copaxone will play nicely together and will monitor you closely.
If Copaxone works to keep you MS in check you'll be ahead of the game. Rituximab is kind of a "When all else fails" treatment.
Kyle
Well, I spoke with my rheumy and he said that there is very little data on using Benlysta with Copaxone. He contacted both of the manufacturers. General concenses is that I will attempt to take both treatments unless my labs or symptoms indicate otherwise. I did bring up the medicine you all referenced (Rituximab) but he commented that it is not approved for Lupus/Sjogrens treatments and I would never get it covered ;-( I did get co-pay assistance for the Copaxone and I will only have to pay $35.00 per month and they will pick up the $12,800 balance.... unbeleiveable. I am still struggling a bit to understand if the reason why I have struggled to manage my Sjogrens is because it wasn't the Sjogrens, it was the MS...
Karry,
I have noted the name of the medicine and will reach out to my rheumatologist tomorrow. I am very "uncomfortable" in my own skin... I am sure it will pass, but for now, it truly *****... thanks for you continued supports...
I have noted the name of the medicine and will reach out to my rheumatologist tomorrow. I am very "uncomfortable" in my own skin... I am sure it will pass, but for now, it truly *****... thanks for you continued supports...
If you can ask about Rituximab because it is used to treat both conditions. I originally had it for my Rheumatoid Arthritis & now I have MS I was thinking what am I going to do because my RA is severe & I can't come off it.
I spoke to my PCP the other day & she was saying how Rituximab is used off label for just about any autoimmune disease & it's so successful. I think in a situation like yours it is needed. Mixing drugs is where it gets technical & most doctors just don't have the answers to these scenarios.
It's hard to be where you are at the moment. It will take time to adjust but at some stage you will have to or you will lose your quality of life. Give yourself the time to grieve & then make the desicions about drugs.
(((HUGS)))
Karry.
I spoke to my PCP the other day & she was saying how Rituximab is used off label for just about any autoimmune disease & it's so successful. I think in a situation like yours it is needed. Mixing drugs is where it gets technical & most doctors just don't have the answers to these scenarios.
It's hard to be where you are at the moment. It will take time to adjust but at some stage you will have to or you will lose your quality of life. Give yourself the time to grieve & then make the desicions about drugs.
(((HUGS)))
Karry.
Just checking in... I have been very "detached" since Monday's diagnosis. I was initially "relieved" that there was a legitimate reason for my symptoms but now I am just... I don't really know, just detached. I have been really edgy with my spouse... His opinion is that we aren't going to freak out until we have a reason to freak out.. But inside-- I am already freaking out. My mother-in-law is treating me like "dead man walking" afraid to disappoint or upset me, has decided to cook one night a week for my family to take some burdeon off of me, except I don't even cook the meals- my husband does so it ends up just turning into a night every week where I am expected to act like everything's fine or she will be all upset or worried about my being upset. I know I am being difficult, I am being ungrateful, I just am in a really weird unsteady-feeling place. My rheumy called me Friday and says he isn't sure the Benlysta and Copaxone are a good fit. He is going to research it. If it isn't, he said he may have to send me to a sjogrens specialist for management as he doesn't feel overly comfortable with what options we have...
I am so appreciative for all the kind words. I will follow up with my neuro about the other treatment options, as Copaxone does not sound fun... I am sure I will be reaching out to gain more insight as I continue to digest this all....
Sorry about the diagnosis. It will take a little adjusting to the new diagnosis. You at least have been through the process of accepting a not so fun illness before.
It is possible to still lead an okay life with two serious diseases. I have MS and stage 4 Cancer. I have to do chemo all time with the Cancer.
I learned a "New Normal" with MS and then another "New Normal" with Cancer.
No one wants these diseases. It seems rather unfair when they start stacking up. Basically it is taking it one step at a time and being kind to yourself.
It gets confusing because I do not always know which disease is causing my symptoms. I have a good PCP I can go to which helps a lot. The Specialists often blame whatever on the other disease.
Hang in there.
Alex
It is possible to still lead an okay life with two serious diseases. I have MS and stage 4 Cancer. I have to do chemo all time with the Cancer.
I learned a "New Normal" with MS and then another "New Normal" with Cancer.
No one wants these diseases. It seems rather unfair when they start stacking up. Basically it is taking it one step at a time and being kind to yourself.
It gets confusing because I do not always know which disease is causing my symptoms. I have a good PCP I can go to which helps a lot. The Specialists often blame whatever on the other disease.
Hang in there.
Alex
COMMUNITY LEADER
Hi and welcome to our little MS community!
I'm really sorry you've joined the club no one chooses, give your self some time to digest what this new dx means, if it was unexpected it can be quite a shock to get your head around it, so be kind to your self.
Our health pages may answer a lot of your questions but no question is off limits, so just ask and we will try our very best to help you!
Hugs...........JJ
I'm really sorry you've joined the club no one chooses, give your self some time to digest what this new dx means, if it was unexpected it can be quite a shock to get your head around it, so be kind to your self.
Our health pages may answer a lot of your questions but no question is off limits, so just ask and we will try our very best to help you!
Hugs...........JJ
Sorry to hear you have MS. I hope you have some support to help you deal with this right now. You have come to a forum with people who you can talk to about anything & everyone is supportive.
I'm with Kyle on the DMD front. I RA & some other autoimmune conditions & I take Rituximab which covers the RA & MS. It's only every 6 months as well so it has to be one of the most convenient DMD as well. In some cases it can be used 12 monthly.
Take Care of yourself............Karry.
I'm with Kyle on the DMD front. I RA & some other autoimmune conditions & I take Rituximab which covers the RA & MS. It's only every 6 months as well so it has to be one of the most convenient DMD as well. In some cases it can be used 12 monthly.
Take Care of yourself............Karry.
Sorry to hear you have officially joined our club. Does the MS diagnosis pile on to of or replace the SS diagnosis. Maybe you can switch the Benlysta for Rituxan which seems to work on both :-)
Kyle
Kyle
Went to the neuro today and gave me a diagnosis of MS. Will start treatment as soon as they decide what will play with my Benlysta the best :-) Don't know how I feel right now about it...
I appreciate everyone's input. This forum has offered a tremedous amount of support, I didn't realize I needed!
No Benlysta is not a TNF inhibitor. I believe it is a monoclonal therapy.
I was told when I first came on the site by some very wise forum members that just because I had RA that it doesn't mean you can't have MS & they were absolutely right. I don't know what I would have done without the support of the community here so you've come to a great place.
Good luck with your appointment & keep us updated.
Take Care
Karry.
I was told when I first came on the site by some very wise forum members that just because I had RA that it doesn't mean you can't have MS & they were absolutely right. I don't know what I would have done without the support of the community here so you've come to a great place.
Good luck with your appointment & keep us updated.
Take Care
Karry.
I appreciate everyone's input. I am still very mobile and currently employed, but there are days where I'm really fatigued. I take adderol for add but now I am wondering if the add symptoms are interrelated with the CNS stuff... If it weren't for the adderol I know I couldn't function daily . I am by no means a slacker but I did have up quit a very good paying j
Yes it is possible. I'm one of those lucky (NOT) one that have both SS and MS.
Dennis
Dennis
Hi, and welcome! Yes, it is entirely possible to have more than one autoimmune process going on at the same time. I know a woman who has DM1, SS, MS, RA, and Hashimoto's all at the same time. The good news, is, that between flares of one or another or all, she's still hiking and taking care of a grandkid!
I'm looking forward to hearing of your diagnostic journey.
I'm looking forward to hearing of your diagnostic journey.
I forgot to ask you what drug treatments are you on for SS? It dawned on me that you may have been on or are on a TNF inhibitor like Remicade or Enbrel.
The TNF inhibitors have been found to bring out MS in some people...if you could put it that way. I was on both of these drugs for my RA. I clearly had problems that were suggestive of MS before going on these drugs but I didn't know any of that at the time. It is not recommended to use these drugs if the patient has MS. What the relationship between theses drugs & MS I'm not sure.
It would be worth bringing up with your Neuro IF you are on or have been on one of these drugs. Just a thought.
Take care
Karry.
The TNF inhibitors have been found to bring out MS in some people...if you could put it that way. I was on both of these drugs for my RA. I clearly had problems that were suggestive of MS before going on these drugs but I didn't know any of that at the time. It is not recommended to use these drugs if the patient has MS. What the relationship between theses drugs & MS I'm not sure.
It would be worth bringing up with your Neuro IF you are on or have been on one of these drugs. Just a thought.
Take care
Karry.
Hi there & Welcome,
I can understand your question but I'm unsure of the answer to be honest. I just know that SS is a very good mimic of MS & is one of the conditions (amongst many others) they have to exclude before dx MS.
I am sorry I don't have the knowledge to help you. I think your Neurologist should have at least some idea when you see them next week as you have had some testing that has given some interesting results.
Hopefully a forum member with more experience can give you some ideas as I've only been dx'd 4 weeks so I don't have the knowledge that many others on this forum have.
Best of luck & let us know how you went.
Take Care
Karry.
I can understand your question but I'm unsure of the answer to be honest. I just know that SS is a very good mimic of MS & is one of the conditions (amongst many others) they have to exclude before dx MS.
I am sorry I don't have the knowledge to help you. I think your Neurologist should have at least some idea when you see them next week as you have had some testing that has given some interesting results.
Hopefully a forum member with more experience can give you some ideas as I've only been dx'd 4 weeks so I don't have the knowledge that many others on this forum have.
Best of luck & let us know how you went.
Take Care
Karry.
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