Arthritis & COVID-19: Are arthritis sufferers at an increased risk, should medicines be stopped, what specific precautions should be taken?

We are all in difficult time. The numbers affected by COVID-19 are increasing exponentially every other day & we are hearing scary stories from across the globe.

If you suffer from arthritis; I am sure you would have many queries in your mind. Let us try & sort them out today.

1) Arthritis medications work by suppressing the immunity. Does that mean arthritis warriors on prednisolone/ DMARDs/ biologics are at an increased risk?

2) Since medications increase the risk; should the medicines be stopped to mitigate the risk?

3) What would happen if the medicines are stopped? What if the arthritis flares up?

4) Can we calculate the risk based on the medicines & precautions to be taken based on the risk profile?

We have a few videos to answer these questions:

 

 

 

Many of you may have experienced a shortage of hydroxychloroquine (HCQS, Plaquenil) as well. Do you know what you can do if you are not able to procure it?

 

All in all, there is no reason to panic.

  1. Understand your risk status as per the flow chart in the video
  2. Understand precaution (Standard social distancing, strict social distancing, shielding) & follow them. See what is appropriate for you based on your risk status.
  3. Speak to your rheumatologist. Do not stop any medication on your own.

 

Image source:

Is there is a shortage of tab. hydroxychloroquine (HCQS, Plaquenil). Why? What can you do if you are not able to procure it?

hcqs

If you are suffering from rheumatoid arthritis/ lupus/ other connective tissue diseases; you must be taking a medicine called hydroxychloroquine (HCQS, Zyq, HQ Tor, OXCQ, Plaquenil). Many of you must not be getting it in the pharmacy stores in recent times.

Why is there a shortage of hydroxychloroquine?

Hydroxychloroquine has been approved in treatment of coronavirus (COVID-19) in many countries across the globe. In India, ICMR has approved it as well. Central & state government in India has procured a substantial stock for the government hospitals. There have been instances of general public buying the medicine as well. All this put together has meant shortage & unavailability in local pharmacies.

Is hydroxychloroquine banned?

No. This rumor has been doing the rounds due to the non availability of the medicine. However, be rest assured, it has not been banned.

What can a patient on hydroxychloroquine do?

Speak to your rheumatolgist. He may be able to help you get the medicine with the help of the pharmaceutical company.

In case you are not able to procure it —

  1. Hydroxychloroquine is a long acting medicine & remains in the tissues for a long time. It is detected in urine even 3 months after stopping it. If you miss it for 7-10 days, there should not be a major issue in a majority.
  2. You may take tab. chloroquine phosphate 250 mg instead of hydroxychloroquine 200 mg. Do speak to your rheumatologist about this before changing over.
  3. Do speak to your rheumatologist & see if he wants to increase the dose of other medicines to make up for hydroxychloroquine.

Pharmaceutical companies have increased the production of hydroxychloroquine & the availability issue should be sorted out soon.

Ref: https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/009768s037s045s047lbl.pdf

Deep breathing exercises for Ankylosing Spondylitis

During normal breathing, ribs move up & down to expand the chest cavity. This movement occurs where they join the vertebrae (costovertebral joint). In ankylosing spondylitis, these joint get inflamed & fused. Once fused, the rib movement gets restricted. This leads to ‘strapped-in’ feeling & breathlessness while doing day today activities.

Just as back exercises keep your spine flexible, so also can deep breathing exercises keep the chest wall elastic & preserve one’s ability to take a deep breath.

Here are a few ‘deep breathing exercises’ to help you keep the chest wall elastic & prevent fusion of the costovertebral joints.

 

  • Rib cage exercises- standing arm exercise, exercise with the ribcage band, lying down & arm stretch exercises ( first three exercises in the video) help exercise the ribcage muscles & prevent fusion at the costovertebral joints.
  • The next two exercises help exercise the diaphragm. During inspiration, the diaphragm moves downwards & expands the chest cavity. These exercises will help you with a more effective breathing particularly if you already have restriction in rib cage movements.
  • The last exercise will help you understand the ‘rib cage breathing’ & ‘diaphragmatic breathing’ & use both more effectively.

Perform these exercises every day; 10 times at a time, at least twice a day.

 

One can also use an incentive spirometer to exercise the respiratory muscle.

It is a medical device used to improve the function of the lungs & is generally used after a thoracic surgery. However we can also use it to improve the function of the ribcage muscles.

Here is a video to help you understand how to use it–

 

Take 15- 20 breaths with the spirometer at least twice a day.

Don’t forget to continue your back exercises. They surely complement these exercises & help you preserve your breathing despite ankylosing spondylitis.

Why is one screened for tuberculosis prior to starting TNF blockers?

Tuberculosis (TB) is an infection caused by bacteria. It most commonly affects the lungs. When a patient of pulmonary TB coughs, the bacteria are discharged in the air. If someone inhales these bacteria, they then find a way into the lungs. Once in the lungs- the bacteria face the following-

  • The bacteria are killed by body’s immune system. They are destroyed & cannot harm the body.
  • They lodge in the body, overcome the immune system & cause an active infection- tuberculosis.
  • The immune system does not kill them but instead jails them (literally; it forms a granuloma—a jail wherein the bacteria remain in dormant- inactive form). So the bacteria are in the body, but are jailed in dormant state & do not cause harm. Anything that frees them from the jail can make them active & lead to an infection.

The bacteria remain in the granuloma jail for years in a dormant phase. They are inactive & do not cause an active infection while in this phase. This is called ‘Latent TB’. The person does not have an active infection & does not spread it to anyone.

TNF alpha is a cytokine (chemical in the body) that is required for maintaining the integrity of the granuloma & also for other defence mechanisms that keep these bacteria dormant. TNF alpha blockers (Remicade, Infimab, Inflectra, Enbrel, Etacept, Intacept, Benepali, Humira, Exemptia, Cimzia, Simponi) are used to treat autoimmune ailments like rheumatoid arthritis, ankylosing spondylitis.

If we start TNF blockers in a person who has latent TB, the granulomas would open up, setting the dormant TB bacteria free & thus leading to active TB infection. This is called for reactivation of TB. This is why, one is always tested for active/ latent TB before TNF blockers are thought of. Active pulmonary TB can be diagnosed by examination & X-ray of the chest along with sputum test. TNF blockers are not given if one has active TB.

Tests for Latent Tb include Mantoux test & IGRA (Interferon gamma release assay commonly known as the TB gold test). A positive test (either) would suggest presence of latent TB.

In case of latent TB, one needs to be treated before TNF blockers can be given. The treatment recommendations vary from country to country. TNF blockers can be given after 1-2 months of this treatment.

Thus the chance of reactivation of TB with TNF blockers is real but can be minimised by proper testing & treatment for latent TB.

Ankylosing spondylitis update from American College of Rheumatology conference 2016


American College of Rheumatology conference is an annual event where experts, Rheumatologists & researchers meet & insights & advances in rheumatological ailments are discussed.

The important updates for AS warriors from the conference is the further research into newer treatment options.

  1. Secukinumab (Cosentyx): has already been approved by US FDA. Studies looking at long term effect (>1 year) were discussed & show good efficacy of the drug in AS.
  2. Tocilizumab (Xeljanz) : A new ray of hope for AS. It has already been approved for rheumatoid Arthritis. It was studied in 207 patients of AS & has shown promising results. However this is quite early. One would require many more studies & the FDA regulatory approval procedure for it to be used in AS. The results definitely look promising & is a ray of hope for AS.
  3. Ustekinumab- another new biologic being studied for AS. Early study shows promising results & is a drug to watch out for.

All in all, a lot of action in the AS treatment arena. With a lot of focus targeted at AS, we should expect more options to treat AS in near future. 

Can a positive HLA-B27 test turn negative later & vice versa?

hla b27

Has this happened to you? A negative HLA-B27 test turning positive later or vice versa?

Technically speaking, this can never happen. HLA-b27 is a genetic marker & just like a blood group it can never change. In that case, what can go wrong?

Let us now understand how the HLA-B27 gene is tested.

It is processed using three different methods

  • Microlymphocytotoxicity (MLCT)
  • Flowcytometry (FC)
  • DNA based typing using a Polymerase chain reaction based assays (PCR)

The methods are arranged in the order of their accuracy with PCR based method being the most accurate. A few patients that test negative with Flowcytometry method do turn out to be positive with the PCR method.

Flowcytometry can also give an ‘indeterminate’ (inconclusive) report that needs to be rechecked with a PCR based method. This is how the discrepancy in subsequent tests sets in.

So the next time to get your HLAB27 checked; do have a look at the method as well.

 

 

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How to make the most out of your rheumatologists visits


This is definitely one of the best ways to understand the ailment in its entirety. However, given the long queues at our clinic, time is becoming a scarce resource. We need to listen to the patients so that we understand the intricacies of the disease & also not miss out on anything.
However, you can help us in this endeavor to listen to every important point of yours with these smart tips.
 
1. Always remember that if you organize everything before the visit, you can make the most out of it.
2. For the first visit, a neatly written description of your history with specific details of hospitalizations & important reports. This is especially helpful especially if there are multiple files.
3. List of all medications including alternative therapy ones.
4. Share details of your family history – these details can help reach a diagnosis. It also helps understand the risk of developing a disease.
5. Always enlist your concerns & particular questions- you will be focused & happy at the end that all your questions were answered.
6. For the follow up visits- discuss your life (personal, professional, family) goals. This helps us understand & plan therapy accordingly. Make your Rheumatologist a partner in achieving the goals.
7. For the follow up visits- discuss any major life decisions you are planning to take especially if the reason is related to the ailment.
8. Before leaving the clinic always check that you have understood all the medicines.
9. Ask for any warning signals that you should watch out for & report immediately.

Is Rheumatoid Arthritis a lifestyle disease?

Time & again, rheumatoid arthritis gets labeled as a lifestyle disease. In fact, just came across an article that blames genes, stress & poor sleep for causation of Rheumatoid arthritis.

 

By definition, lifestyle disease is a disease caused by the way a person or a group of people live. Lifestyle diseases include Type II diabetes, hypertension (high blood pressure), dyslipidemia (high cholesterol), obesity. The definition also includes diseases associated with alcohol, tobacco & drug abuse.

 

Rheumatoid arthritis is an autoimmune disease. Normally, body’s immune system is designed to fight microorganisms causing infections. Due to various reasons, the immune system may start considering its own body organs as foreign and attacks it. This self intolerance is known as autoimmunity. In Rheumatoid Arthritis, synovium (inner lining of the synovial joints) is considered by the immune system as foreign & bears the brunt of the attack. The immune attack causes pain & swelling of the joints.

 

As we have seen, one’s lifestyle has nothing to do with the immune attack & is not causative. It is a great injustice to patients with Rheumatoid arthritis to get blamed for their lifestyle & be at the receiving end of unnecessary advice.

Lupus- the Pandora’s box: when all hell breaks loose

lupus pandora box

Lupus has long been represented by two mascots: wolf & the butterfly.
The word ‘Lupus’ (Lupus- wolf in Latin) was coined by a thirteenth century Physician Rogerius as the facial lesions in Lupus looked like wolf bites. The butterfly as a mascot has its origin in the butterfly shaped malar rash seen in SLE.

There have always been debates regarding the ideal mascot for lupus. The wolf is a sinister, cunning animal. It aptly represents what Lupus can do to a person & also represents the origin of the name. However, as a mascot, it has a negative impact.

As against this, butterfly is beautiful & represents vitality. Many have even compared the life history of a butterfly emerging from a cocoon to a Lupus patient emerging with flying colors from a flare.

As I was reading the journal Lupus the other day, a beautiful explanation held my attention. The author MJ Fritzler has highlighted the Greek mythological story of the Pandora’s box in an article.

According to the Greek mythology, Zeus, the father of the Gods & men, ordered Hephaestus, the God of craftsmanship to create Pandora, the first woman on earth. She was endowed with many gifts: clothed Athena, endowed with great beauty by Aphrodite, and eloquent speech by Hermes. After Prometheus stole fire from heaven, Pandora was given a beautiful container by Epiphemus. Pandora was given explicit instructions not to open the container under any circumstance. However, another of her God given traits, curiosity eventually got the better of her & she opened it only to find that all evil escaped & invaded the entire earth. Realizing her error, she tried to make amends by closing the container, but the entire contents had escaped, except for one thing- a winged creature with iridescent wings – the personification of Hope named Elpis.

This story would aptly describe what a Lupus patient goes through. Once diagnosed, it seems like the Pandora’s box is opened because ‘all evil’ seems to break loose. It is the butterfly that gives the hope.

Indeed, over the years, the butterfly has brought hope to lives of Lupus patients & the prognosis has improved significantly.

References:

Boltzer JW. Systemic lupus erythematosus. I. Historical aspects. MD State Med J 1983; 37:439

Lahita RG. Introduction. In: Lahita RG, ed. Systemic Lupus Erythematosus. New York: John Wiley and Sons. 1987; 1-3. (Fifth edition published 2010)

http://lupusadventurebetweenthelines.wordpress.com/2012/04/24/lupus-and-its-mascot-butterfly-or-wolf/

Reflections on Lupus 2013: butterflies, wolves and prophecies MJ Fritzler Lupus, October 2013; vol. 22, 11: pp. 1092-1101

Life of a #rheum patient: It is indeed a juggling act

c6

We always keep complaining that most studies about Rheumatoid Arthritis (RA) focus only on the objective measures of inflammation & other factors rheumatologists are interested in. They hardly ever look at what a patient goes through, physically & mentally due to RA. Caroline Flurey & colleagues have just published a study that looks at Rheumatoid Arthritis from the patient’s perspective.

The study consisted of interviews of patients with Rheumatoid Arthritis to understand how they manage their day-to-day life & cope with their ailment.

The results have been startling. For us Rheumatologists, they are an eye-opener; letting us a sneak preview of what a RAer goes through. As a RAer, I am sure you can identify yourself as you go through the study results.

Here is what the study revealed. I have also added links about remedial actions.

1) Most RAers experience RA as a constant background reality, often being aware of its presence & the limitations it brings. Life is all about micromanaging & macromanaging their symptoms & daily life so that it remains in the background & does not interfere much with daily life.

2) Learning & developing proper coping strategies (details in resources at the bottom of the post) can do a lot good & help keep RA in the background. The aim of any rheumatologist is to keep the RA in remission (background) & minimize the chances of a flare.

3) RA can be & is unpredictable. It can intrude into life in the form of a flare without any notice. A flare can reach a magnum proportion by the time one sits trying to make sense of the fluctuation.

4) Once in a flare, coping strategies do matter. Some try to regain control on their own, some seek medical help right away while some Leave it as the final option.

5) One of the best ways to better manage a flare is to keep a self-help plan ready in consultation with your Rheumie. We have discussed this in the past here on the blog. Let it roll as soon as a flare is recognised & seek a Rheumie appointment in the mean time.

All in all, life of a #rheum patient is indeed a juggling act with a need to balance every aspect of life so as to keep RA & its impact in the background.

DMARDs/ biologics, positive attitude & the right coping strategies help in this regard.

In case, RA tends to overpower & come to forefront in form of a flare, there is no need to panic. Roll out the ‘flare plan’ immediately & push RA in the background again.

Tame your RA

Resources:

1) Study- It’s like a juggling act: rheumatoid arthritis patient perspectives on daily life and flare while on current treatment regimes. Caroline A. Flurey & colleagues Rheumatology (2013) doi: 10.1093/rheumatology/ket416

2) How to plan a house cleaning job with RA?

3) How to arrange the kitchen if you have arthritis?

4) Tips for painless cooking.

image courtesy: http://www.openclipart.org