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purple_butterfly
12-12-2008, 11:08 PM
I posted once before to this support group. My name is Kim. I am the mother of 3, work full time and was diagnosed with Lupus 5 years ago.
I have had symptoms for 8 years. My main symptoms have been pitting edema in all of my extremities, constant headache, numbness and tingling in all extremities and bone pain.
I finally me a rheumatologist that was able to diagnose me by looking at me and confirmed it with a blood test. I was put on Plaquenil and an NSAID and had routine visits. Things were going great once the Plaquenil started working--except for the edema which never went away.
A little over two years ago, after having my third child, I had a bad flare and things have gotten progressively worse since then.
My doc is now telling me that the blood tests all show that I am in remission and that I should be feeling fine, but I don't...I feel worse every day. She has actually suggested that my symptoms are in my head and recommended therapy. My brain can not imagine pitting edema or the rash that is on my face.
Anyways, I am completely discouraged and have decided to take myself off the Plaquenil, Lisinopril and Synthroid and just see what happens when I do not take any medication at all. I have pretty much given up and feel so alone.
Maybe I am just ready for the disease to completely take over and just fade away so that I do not have to feel this pain any more.

sits_inthe_corner
12-13-2008, 02:01 AM
Hugs purple_butterfly

Sorry to hear they never found a way to deal with your swelling.

Which NSAID drug did they put you on and was it the only one they tried?

NSAID's do not work for everyone and there are other choices. You doctor may have been careful of the drug they chose to put you on in combination with the plaquenil.

If your doctor feels you are in remission, I'm wondering if you need to remain on medications? I'm not sure about this and it would be a good question for your doctor.

The swelling may be a seperate issue.

My sister has been in remission for many years, but I get the feeling that she has been extremely fortunate. I do hope it continues for her.

She has not been on any medications for the lupus in a very very long time.

I have edema in my legs, but not my hands or arms. I'm taking a combination of plaquenil and arthrotec75. This combination has been working very well for me.

I will occationally get some swelling, but I just start wearing diabetic compression socks for about an hour in the morning when I first get up. This seems to help control the swelling. After a couple of days the flare subsides and I go on about my usual way.

Do you have any soreness in your joints? Have you been checked for arthritis?

mountaindreamer
12-13-2008, 06:01 AM
Hi purple butterfly,

Sorry to hear about your dilema (sp). I too wonder if it is time for me to go sit on the mountain and see what happens. My Lupus was in remission for several years. I have been rebattling with it for the past 12 years, and am just now starting to get increased dr. involvement. Am going to specialist, getting tests done, etc. I too wonder if the meds are really worth the damage they do. Hang in there, you have 3 young children who love their mom (mine are grown now).

Keep posting, I am sure that we will both get lots of encouragement from those who have been there.


Share a smile today,

Jesse
12-13-2008, 04:02 PM
Purple butterfly, your thread saddens and worries me. You sound like you're giving up. Believe me, I understand your frustration but you must remain strong for your family. They will be lost without you, you can be certain of that. If the doctor is right, you may not need your lupus medication anyway. I wonder about stopping the synthroid, though. Isn't that for your thyroid? If I'm correct, that's not something you can stop without consequences. Why don't you start slowly, cutting back on the lupus meds (assuming your doctor agrees) until you've stopped completely and see if there's any improvement in how you feel. It may be that you need to have your thyroid medication tweaked instead, but you won't know if you stop everything at the same time.

We know and understand that what you're feeling is NOT in your head but is very real. I hope that you find the answers you need.

KathyW1958
12-13-2008, 07:43 PM
Hi Kim,
I read your post here and I feel sad big time. I understand how you feel big time. I have had this rotten illness nearly all of my life and there have been many many times that I just wanted to throw in the towel, but you see when you have children you just can't do that. Think about how they would feel if you were gone. Please reconsider what you are planning to do and find a different doctor ok. Don't let this rotten disease win. I know that that is a lot easier said then done, but please do reconsider. I will have you in my prayers.

Hugs,
Kathy

Danica01
12-14-2008, 02:41 AM
I am so glad you posted! I am so sorry you are so sad and frustrated but you have come to the right spot! There are so many others, as you have found out, that worry and question things just as you do! They are here, we all are here to help you get through this :)

I would like to share with you that I too went off of all my medication, about two years ago when I was in remission. The doctor said it was my choice and he would monitor me closely. The only joy I got out of it was feeling a bit more in control. However, that did not last. I started to get worse and the Lupus started to affect my lungs and blood pressure. For me it has been an up hill battle ever since that moment. I never realized how good I felt until I went off of the medicaion and felt what it would feel like with no medication :?

Please, think twice about this and talk to your doctor and if you do not like what they say........go to another one until you feel you are getting the care you deserve :!:

Hang in there and know that we are all here for you and the choices you make :wink:

Danica

Saysusie
12-15-2008, 04:02 PM
Hi,
I just wanted to pop in to reiterate that stopping all of your medications may be dangerous. There are some medications that, if stopped abruptly, will cause great damage to your body. Think very carefully before you make this decision.
Regardless of what your doctor says or what her opinions are, your symptoms are VERY REAL and they MUST be treated. It may be that some medications need to be modified, or some need to be discontinued in order to be replaced by others. Many of us have had to experiment with our meds and their doses before we were finally able to find a regimen that works for us. Be aggressive with your doctor and tell her that there are very many of us whose blood work shows little lupus activity, but we still suffer from symptoms. The blood work may show no activity BECAUSE of the medications and, if they are stopped, you can throw yourself into a very dangerous place (especially the lisonopril and synthroid).
Never give up. There are many of us who have lived with this disease for 20+ years and have found a way to get the right medication mix, make the best lifestyle changes, and fight our way to a doctor who works with us. It is a battle, yes, but we are all here to help you fight this battle. You are not alone.

Peace and Blessings
Saysusie

purple_butterfly
12-15-2008, 10:34 PM
Thanks you everyone for the advice and support.
I have been on numerouse NSAIDS. Relafen and Voltaren are just a few. They did not help much and now the nephrologist wants me off all NSAIDS because of the concern for my kidneys. There is no kidney damage currently, but they do not want to take the chance.
I saw my GP a few weeks ago and he tested my thyroid. He adjusted my Synthroid and has tested twice. All is normal. I have remained off the Lisinopril, Demadex, and Plaquenil now for 8 days. Feel no difference. Everything still hurts and I am exhausted.
I realize I need to fight for my kids' sake, but how much can I subject them to seeing? I have faught so hard with no resolution. How can I let them watch me fight a battle I am never going to win?

KathyW1958
12-16-2008, 03:25 AM
Hi Kim,
I am wondering have you tried the combination of Plaquenil and Imuran or Methotrexate? I mean has the doctor ever discussed this with you? I am just wondering is all. I hope that they can find a combination that will work for you.

Hugs,
Kathy

Jesse
12-16-2008, 07:29 AM
Purplebutterfly, you have an opportunity here to teach your children an extremely valuable lesson. Show them how to be strong in the face of pain and depression. I'm sure they don't like seeing you in your present condition, but it's so much better than showing them how to give up. Life is tough and all of us here have been dealt a difficult hand. Your sadness and despair is understandable, but if you really want to do what's best for your family, show them what a fighter looks likes. They will look upon you with admiration and love for the courage you've shown.

I'd like to second the suggestion that you ask your doctor about methotrexate, Imuran or one of the other more potent medications. It sounds like what you're taking just isn't enough. You will be amazed how your whole world will improve once you find the right mix of meds to help you. Carry on, and please keep us posted on your progress. We're all in this together and you are one of us. We want to know that you're alright.

Danica01
12-16-2008, 07:51 AM
Jesse,

That was amazing and you inspired me today! Thank you, I needed that and I am sure a lot of others needed that right now :wink:

Danica :angel:












Purplebutterfly, you have an opportunity here to teach your children an extremely valuable lesson. Show them how to be strong in the face of pain and depression. I'm sure they don't like seeing you in your present condition, but it's so much better than showing them how to give up. Life is tough and all of us here have been dealt a difficult hand. Your sadness and despair is understandable, but if you really want to do what's best for your family, show them what a fighter looks likes. They will look upon you with admiration and love for the courage you've shown.

I'd like to second the suggestion that you ask your doctor about methotrexate, Imuran or one of the other more potent medications. It sounds like what you're taking just isn't enough. You will be amazed how your whole world will improve once you find the right mix of meds to help you. Carry on, and please keep us posted on your progress. We're all in this together and you are one of us. We want to know that you're alright.

notsurerfh
12-16-2008, 08:57 AM
You are the mother of 3 you cannot give up. They need YOU! Have your doctors put you on a simple water pill. I have horrible edema, if I don't take my water pill I will gain 10 pounds of fluid on my legs and feet overnight. It took about 2 weeks for the excess to go away but as long as I take that pill every morning I don't get it at all until the week of my period. Nothing seems to help me then. Hang in there and keep fighting.

Jesse
12-16-2008, 05:01 PM
Thanks, Danica. Your comment made me feel good! Isn't it great how we can help each other? We're so fortunate to live in a time when there are forums like this to help us connect with others who truly understand our daily challenges.

purple_butterfly
12-16-2008, 08:42 PM
Thank you all for your support. I promise I will keep the fight.
I have an appointment with my rheumatologist on Thursday. I will let you know what happens.

Danica01
12-17-2008, 09:09 PM
You are absolutley right! A forum like this makes a difference in so many lives and anyone who does not get that should come check it out :D It is an amazing support system for all of us who on certain days feel all alone. I am thankful for all of you and the information and advice that is at our findertips thanks to this amazing forum and the amazing people on here :wink:

purple_butterfly,

Keep your head up and there will be a combination out there that works for you. Sometimes you just have to find your way to it :wink: This can be hard on you and that is why we are here. Hang in there and we will help you get through this :)

Danica




Thanks, Danica. Your comment made me feel good! Isn't it great how we can help each other? We're so fortunate to live in a time when there are forums like this to help us connect with others who truly understand our daily challenges.

purple_butterfly
12-21-2008, 09:02 PM
I went to my appointment. I told my doc how frustrated I am that I am being told I am in remission, but that I still feel this way.
I am back on Synthroid, Lisinopril, Spironolactone and Demadex. My ANA is positive at 1:40 (speckled) but Anti-SM, SM/RNP, SSA, SSB, JO-1, SCL-70 and Anti DNA are all negative.ESR is positive at 73, CRP is positive at 12.70. My doc states that the ANA is not high enough to be a flare, but I have a massive butterfly rash, every joint and bone in my body hurts, still have swelling to all four extremities and belly, still have headaches.
My doc states that this is probably Fibromyalgia and not Lupus, but these results are very close to the first test results when I was diagnosed years ago.
Again, I left her office feeling like I am nuts. She laughed and said she does not know what to do with me. Now I have this awful rash in my right arm pit and extending down my side. They are red and painful bumps that feel hard underneath.
Help....

Saysusie
12-22-2008, 09:27 AM
First, there are persons, with Lupus, who have a negative ANA and who still suffer from extreme flare-ups. The ANA can indicate disease activity, but it IS NOT the only gauge used to determine disease activity. The patient's current symptoms are usually the foremost gauge, then lab results are used to determine disease activity. So, just because your ANA is not high DOES NOT mean that you are not in a flare-up.

Now, it is quite possible that your Fibromyalgia is causing some of your symptoms also. But, the rashes are not due to Fibromyalgia. They are, more likely, due to your Lupus.
There are many different types of rashes can be seen in Lupus:
* Discoid lupus with the red skin patches on the skin and scaliness is a special characteristic rash that can lead to scarring. It usually occurs on the face and scalp and can lead to loss of scalp hair (alopecia).
* Acute Cutaneous Lupus Erythematosus usually presents as an erythematous rash in a butterfly distribution on the face. This blush is slightly edematous (swollen) and is located in both cheeks and across the bridge of the nose. The lesion usually appears after sun exposure but persists a few days to weeks before healing without scarring. It may be accompanied by erythematous (red) lesions in other areas of the body.
* Subacute Cutaneous Lupus Erythematosus lesions may be localized or generalized. The maculopapular rash (A maculopapular rash is a flat, red area on the skin that is covered with small confluent bumps) usually occur after sun exposure, the lesions are usually itchy. It may involve any place on the body, and because the erythematosus lesions may involve palms and soles they resemble a drug reaction. The great majority of these lesions heal without scarring, however, persistent lesions that become crusty may heal with only slight atrophy of the skin. This type of rash is associated with a high prevalence (70%) of Ro(SS-A) antibodies; however, only 50% of cases have positive immunoglobulin deposition in lesional skin by immunofluorescence.
* Chronic Cutaneous Lupus Erythematosus, referred as Discoid Lupus Erythematosus, usually involves the fact, scalp and ears, but it may occur anywhere. The rash may be pruritic (itchy). The lesions at the beginning are erythematous, slightly elevated papules or plaques, that in time become raised, bright red, edematous, later on the center becomes depressed, the color fades and becomes atrophic (sunken in), while the edematous red periphery slowly enlarges and becomes irregular with some telangiectasias (small dilated blood vessels near the surface of the skin or mucous membranes). In older lesions plugging of follicules occurs characterized by small round areas of hyperkeratosis (thickening of the skin )are noted. Later on the lesions heal with a scar, leaving a white area with or without focal hyperpigmentation.
* Lupus Panniculitis, appears as deep nodules. The lesion is situated below the skin in the subcutaneous tissue, and heals with a deep atrophy of the involved area.
* Bullous Lupus Erythematosus is characterized by the presence of blisters which contain a clear seurous fluid, and may range from 3 to 40mm in diameter. The rash usually appears in sun exposed areas, and only rarely is associated with burning sensation, mild pruritus or redness. Some papules may accompany the blisters. The lesion may resolve spontaneously usually without a scar after a week, but they reappear episodical.

Does your rash resemble any of the descriptions above? If so, then it is definitely a Lupus rash.
Treatment can include the following:
1) Sun block: Blocks both UVA and UVB radiation
2) Antimalarials: Use of combination antimalarial therapy (hydroxychloroquine [Plaquenil] and quinacrine) or chloroquine (Aralen), which has more risk of retinopathy, is sometimes necessary
3) Dapsone G6PD status should be checked
4) Retinoids Avoid using in pregnant women
5) Corticosteroids Use of corticosteroids may be necessary as part of initial therapy for severe discoid lupus or for lupus vasculitis; intradermal corticosteroids are helpful for individual discoid lesions, especially in the scalp
6) Immunosuppressive drugs: Methotrexate (Rheumatrex) or azathioprine (Imuran) is used as steroid-sparing drug
Thalidomide
7) (Synovir) One of the most effective drugs for treatment of discoid lupus, but teratogenicity and neuropathy will limit its acceptance and use.

If your rash resembles any of the above, you should indicate this to your doctor and, perhaps, discuss the possible use of one or more of the treatments listed above.
I wish you the very best!

Peace and Blessings
Saysusie

purple_butterfly
12-23-2008, 10:36 PM
Hey everyone;
Well, I got the results of some of my bloodwork. I am confused.
ESR high
CRP high
ANA normal
ENA pending
C3 high
Since the ANA is normal and the C3 is high (should be low in Lupus flare), I am being told that I am not in a Lupus flare. So, why do I feel so lousy?
The pain is almost unbearable sometimes and the butterfly rash is out of control. Now I have these horid looking hard red bumps in my armpit that are painful. Plus, the edema is still out of control
I don't know what is going on with my body, but if it is not Lupus, than what is it?
HELP

Saysusie
12-28-2008, 09:27 AM
I'm sorry, I have to disagree. A High CRP, ESR and a high C3 all indicate inflammation. Inflammation is an indication of active Lupus.

The high ESR indicates that there is inflammation occurring. It does not specify what condition is causing the inflammation, but put together with other tests, it can be extrapolated that your Lupus is causing the inflammation.

Now, ESR is also helpful in diagnosing two specific inflammatory diseases, temporal arteritis and polymyalgia rheumatica. A high ESR is one of the main test results used to support the diagnosis. It is also used to monitor disease activity and response to therapy in both of these diseases.

Temporal arteritis, also known as giant cell arteritis, is an inflammatory condition affecting the medium-sized blood vessels that supply the head, eyes, and optic nerves. Patients with temporal arteritis usually notice visual symptoms in one eye at first, but as many as 50% may notice symptoms in the fellow eye within days if the condition is untreated. The common symptoms are: Headache; Tenderness of scalp (combing hair may be painful); Pain in temple area (may be excruciating); Transient blurred vision; Loss of appetite; Fever; Fatigue; Depression; Drooping lid;
Double vision; Sore neck; Jaw soreness, especially when chewing food.

Polymyalgia rheumatica (PMR) is an inflammatory disorder that causes widespread muscle aching and stiffness, primarily in your neck, shoulders, upper arms, thighs and hips. Polymyalgia rheumatica symptoms may include: Moderate to severe aching and stiffness in the muscles in your hips, thighs, shoulders, upper arms and neck; Fatigue;
Unintentional weight loss; Weakness or a general feeling of being unwell;
Sometimes, a slight fever; Anemia low red blood cell count.
Initially, you may have pain on just one side of your body, but as the disease progresses, symptoms are likely to occur on both sides. Between 10 percent and 20 percent of people with polymyalgia rheumatica have a related condition called giant cell arteritis.

Hig CRP (C-Reactive Protein) levels are almost always associated with other risk factors for heart disease. These include smoking, obesity, sedentary lifestyle, increased cholesterol, hypertension and metabolic syndrome. Elevated CRP generally reflects the vascular injury and inflammation that results from other risk factors (such as inflammatory diseases like temporal arteritis/polymyalgia rheumatica?). C-reactive protein (CRP) is elevated in the blood when there is widespread inflammation somewhere in the body. Both the ESR and the CRP are acute-phase reactants and commonly reflect the state of the immune and inflammatory response. Both the ESR and the CRP can be elevated by similar factors, such as infection, malignancy, and tissue trauma. They are nonspecific tests and must be placed in clinical context.
Persons with inflammatory diseases such as rheumatoid arthritis or lupus can also have markedly elevated C-reactive protein levels. Other causes of high C-reactive protein include cancer, trauma, burns, and recent major surgery.

C3 - The complement system is one of the natural defense mechanisms that protects the human body from infections and perhaps tumors. Patients with abnormal (high or low) complement levels usually falls into one of four categories: 1) multisystem rheumatic disease such as systemic lupus erthematosus (SLE), 2) glomerulonephritis;
3) hemolytic anemia or, 4) recurrent or overwhelming infections. Decreased levels of C3 are associated with autoimmune disease, neonatal respiratory distress syndrome, bacteremia, tissue injury and
chronic hepatitis. Increased levels of both C3 and C4, in addition
to increased concentrations of C-Reactive Protein, are linked to acute inflammatory disease and tissue inflammation.

I am not a doctor, but I believe that a low C3 is not necessarily the only indication of a Lupus flare. A low C3 is found in rheumatic disorders, yes. However, you have a high C3. A high C3 (in addition to the high CRP and high ESR) indicates inflammation. Lupus is also a disease of inflammation which can occur anywhere in the body (tissues, arteries and internal organs). Inflammation IS an indication that your disease is active.

Perhaps someone else will see this differently from me. But, it appears that there is definitely inflammation occurring. Perhaps you can call your doctor to discuss this with him/her and ask for treatment to manage the inflammation.

Best Of Luck
Saysusie

mountaindreamer
12-28-2008, 10:19 AM
Wow,

Welcome back Saysusie....hope you had a great trip.

share a smile today,
phyllis